Sherri Fillipo http://www.sherrifillipo.com living and dying with metastatic breast cancer Mon, 11 Apr 2016 15:19:07 +0000 en-US 1.2 http://www.sherrifillipo.com http://www.sherrifillipo.com 1 https://wordpress.org/?v=4.4.2 Words of Wisdom From My Hairstylist http://www.sherrifillipo.com/2014/09/17/words-of-wisdom-from-my-hairstylist/ Wed, 17 Sep 2014 13:53:24 +0000 http://www.sherrifillipo.com/?p=598       My hairstylist, whom I love and adore, has been with me on this cancer journey for two years. We had just gotten my once bald head to sport a blunt bobbed haircut - almost - when cancer struck again. We both cried when we looked in the mirror because we had come so, so close to getting me to look like my pre-cancer self. And then it was gone. It was Thanksgiving two years ago after the diagnosis that the cancer had spread,  when I told him to cut it all off. I could see the panic in his eyes, all our hard work literally down the drain. He asked me if I wouldn't consider waiting until after Thanksgiving so as not to shock the family, as it were. But I pushed him and indeed he cut my hair. He is young and dear and I wouldn't trade him for anyone else. And I know him pretty well at this point. He left for a few minutes talked to his mentor composed himself and came back, feeling more positive about the haircut. We both got a little teary as he went to work but at the end, he said, "You know what, Miss Sherri?" (Yes, that is what he calls me. I don't think I would let anyone else call me that.) We are just going to 'rock this new haircut' like we wanted it to be this way. NOT because we had to! I love his attitude. So we did. Later after Thanksgiving, we brought the clippers out and he shaved my head for chemo. He cried. I cried. We are both so tired of all of this. So, almost two years later, I went in yesterday for a color and cut. We have decided to keep it short. I mean really short. I think we are doing it for a couple of reasons. One, to ward away the evil spirits (just kidding) but also when the inevitable scan comes back with bad news, I am already sporting the short cut. That much less to shave in the end. I also told him today that I was starting a blog and his beautiful blue eyes widened in surprise!  I told him I know I am an old dog but he waved that off. What he told me was that I had to promise not to sugarcoat anything. That my readers needed to understand that this is in real time with potential real emotions coming out of this keyboard. He suggested I place a disclaimer at the top of the home page! I won't go that far but he made me stop and realize, this may not get pretty and making it pretty would do a disservice to those women who might read this and are struggling with breast cancer. He said you don't want to make it look easy because it's not. He is such a wise man to be so very young.]]> 598 0 0 0 Why Am I Doing This? http://www.sherrifillipo.com/2014/09/15/why-am-i-doing-this/ Mon, 15 Sep 2014 20:59:40 +0000 http://www.sherrifillipo.com/?p=617 shell Today marks my first post. I didn't fully realize what an old dog I was until I started trying to learn about blogs. And now I have a whole new vocabulary with words like slugs, pings and pikes. Oh my. But what I really wanted to do was chronicle what's left of my life for those who care to come along with me. It's difficult having a career come to a grinding halt and then add a terminal disease on top of it. I have always been a writer at heart but now that I am coming upon my second anniversary of metastatic breast cancer, I feel if I am ever going to write, now is the time.]]> 617 0 0 0 10 0 0 13 0 0 14 0 0 Breast Cancer and Seaglass http://www.sherrifillipo.com/2014/09/16/breast-cancer-and-seaglass/ Tue, 16 Sep 2014 15:11:04 +0000 http://www.sherrifillipo.com/?p=619 beach-405615.jpg If you were to look through my recent employment history, you would see what appears to be some hiccups. Well, actually the hiccups turn out to be bilateral breast cancer which ground my full-time career to a screeching halt. And if you were to take a second look, just when I got back up and started down that patient safety career highway again, I stopped. Well, although I stopped, the breast cancer decided to take a journey and move on to my liver. So much for dusting myself off and moving on with life. So, I now have a lot of time on my hands which allows me to do a lot of thinking... I just got back from my vacation on the outer banks of North Carolina where I sat and walked and looked for sea glass, my favorite hobby. As most anyone who has a serious illness will tell you, you spend a lot of time thinking and reflecting on life and death. And it dawned on me while walking last week, that cancer has made me a much kinder, gentler woman. It, like the ocean does to discarded glass, has made me softer, has buffed away my rougher edges. Many relationships have been mended since my diagnosis; many others have gone deeper due to time suddenly not being on my side. My family calls more often. I call more often. Though it has changed my life and those lives around me forever, it has made me thankful for the tumbling and tossing it has done to me - like the glass that fills my jars and my pockets. This is again why I wanted to start a blog and have you, if you are interested, follow me as your time and interest allow. In my mind it's a lot like when a group starts out on a walk down the beach together. Little by little, smaller groups form, some walk alone, some catch up to you and walk a while before stopping to pick up a shell or race ahead to someone else. I will be here walking along (at a pretty slow pace!) but join me as you want, when you can.]]> 619 0 0 0 11 0 0 12 0 0 Bucket Lists: Mine and Yours http://www.sherrifillipo.com/2014/09/18/bucket-lists-mine-and-yours/ Thu, 18 Sep 2014 17:02:07 +0000 http://www.sherrifillipo.com/?p=640 Old enamel milk can I think a lot about my bucket list.  It probably started after watching the movie The Bucket List starring Morgan Freeman and Jack Nicholson several years ago. At that time, I used the phrase loosely and kept those things in my head that I 'might want to do someday.'  Then when this whole cancer thing came crashing down, I got serious about it and started writing things down. I have a very generous husband who does not want to be mentioned in my blogs so don't mention it, but he has been wonderful in helping me check off some really big items and some very small ones. I would urge you to go ahead and make your own list. It would be a good exercise in helping you form what is really important for you to see, do, or accomplish and it also will help you prioritize where to place your time, energy, and money. So far, I have checked off the following items:
  • Visiting Montreal and practicing my perfectly horrible French on some unsuspecting cab driver
  • Attend one more Eagles concert (although I keep trying to drag this one back on the list, my beloved vetoes it every time!)
  • Eat at the Anchor Bar in Buffalo, NY where they "invented" buffalo wings. Yes, they were delicious. My husband, stepdaughter and her boyfriend came along and we devoured 50!
  • Go to the Caribbean and just sit and look at the blue water. I have never seen such beautiful shades of blue, blue-green. And to our delight we found some seaglass there as well!
  • Go to the Sea Glass beach in northern California. It was amazing! You just walked on seaglass instead of sand. My mother who is seaglass challenged having never been able to find any on her own, asked me to bring her back a bucket of glass (she literally meant a bucket) and I was able to. She just had to sift through the sand and pebbles to find it.
What's next?
  • Living here in upstate New York, I keep hearing about skating on ponds in the winter. Doesn't that sound so Currier and Ives romantic? I know someone special who lives on a BIG pond and she is ready to host me!
  • I want to go down the luge at Lake Placid. My biggest supporter of this trip is my brother-in-law. With his persuasive personality, I keep thinking we will be able to make this a family trip, nieces, nephews and all!
  • I want to see Frank Lloyd Wright's Falling Water home. This will be an easy one as it is just a few hours from my own home.
  • I am a real foodie at heart and want to go to the Culinary Institute of New York and have dinner there. Maybe stay overnight and eat several meals there!
  • And though rather clichéd, I would love to swim with a dolphin. I have loved dolphins since before it was cool, in high school I collected them in glass, wood, and porcelain.
I really went in depth to get you to start thinking about what you might like to start doing. My urging to you is to start today as we all know, our future is not guaranteed.]]> 640 0 0 0 15 0 0 Bucket List Part 2: The Outrageous and the Letting Go http://www.sherrifillipo.com/2014/09/19/bucket-list-part-2-the-outrageous-and-the-letting-go/ Fri, 19 Sep 2014 16:11:27 +0000 http://www.sherrifillipo.com/?p=664 Bokeh abstract bright background So, since yesterday's post, I have talked to family and friends and they want to know some of the things that I have let go of and  some of my outrageous bucket list items that if I could wave that magical wand, I would make happen. OK, so here goes. (What I am afraid of by doing this is that this list might show more of my strange internal wiring than is necessary!) Things that I have let go of:
  • I am never going to learn French to the level that I once dreamed of (even with two great friends who are native speakers!)
  • The month of the metastatic diagnosis, I had just completed an application to Loyola for a master's degree in health law; I am so disappointed about letting that go that I still allow them to email me and query my continued interest. But clearly this degree won't happen.
  • Lynne, this is for you: although I pushed through six months of full-time black belt training and completed my project, I moved on from that role and never obtained certification; while I have been given another chance, it seems too daunting to finish that final lap.
  • I will never write a book. I have a quirky southern novel in my head but alas, it will have to remain there.
  • Attending culinary school
  • Being a grandmother
  • I can't go on as I will become too maudlin.
My outrageous, need a magic wand for these:
  • I would love the Eagles to sing Hotel California to me (I told you these were wild) Heck, I 'd let them choose the song!
  • I would love to meet Michael Strahan (former Giants football player and co-host to Kelly Ripa) I am told my mother-in-law can never know this as she is a staunch Eagles fan so if you meet her, keep this under wraps. Why I want to meet him, I don't know. He just seems so likeable. I too, am an Eagles fan.
  • I live 10 minutes from where Tommy Hilfiger grew up and I keep thinking I am going to run into him and he is going to want me to model clothing for his middle age clients. Like he designs anything for middle aged people. Have you ever gone in and looked at the size of the shorts he sells? My linen napkins are larger.
  • I'd like to sing and dance with Jimmy Fallon. Yes, I know I can't sing but in my mind, he won't care! I can keep up with him on the dancing part.
  • I think dinner with Steve Martin would be a crazy good time!
  • I would like to sing back-up (they could turn the microphone off) at a concert of some kind. Anything from a 70's band. My useless knowledge of most all 70's songs is quite extensive. If you don't believe me, ask my in-laws.
  • I would like to be a guest bartender somewhere. I have been told I make a mean margarita and a mean G&T; I have also been told I am a "long pour" and no one would let me tend bar.
OK, enough of this silliness. Maybe as you are at work on this Friday, you can add to your list and/or come to terms with those things that may need to be let go of so you can spend your time accomplishing what can!]]> 664 0 0 0 16 0 0 17 16 1 18 0 0 19 18 1 20 0 0 21 20 1 22 0 0 My Nemesis NED http://www.sherrifillipo.com/2014/09/22/my-nemesis-ned/ Mon, 22 Sep 2014 13:35:11 +0000 http://www.sherrifillipo.com/?p=675 ned

Although I am not crazy about it, Ned goes everywhere I go. Funny, my husband sort of likes him. Ned lulls him into thinking everything is all right even though all three of us know it is not true. That is the way it often is with metastatic breast cancer. After the shock of the announcement that the cancer has found its way out of your breasts, after the second onslaught of chemo, the second time your husband shaves your head and afterward you put on all of those stupid hats again, it almost becomes routine. And then a few months later, your oncologist says with a bright, wide smile, “Your scans show no evidence of disease (NED)” and everyone waits for you to jump up and shout for joy. But you know what? You don’t because unless that proverbial bus creams you on the way to the grocery store one morning, you know how this book ends. You don’t know how many chapters are left in the book, true – but you do know who dies in the end. So Ned hops in the car with me as I go about my day and when I meet friends for dinner, one of them will invariably say, “You look so great! You really do! You simply don’t look like you have cancer!” I know she means that as a compliment but I cringe inside as Ned looks on smiling. You see, Ned is a deceiver. He knows that I am not ok, that no matter how much make-up I apply I still don’t have eyelashes. That no matter how good I look, my life is being cut short. I may have two years left, maybe. But Ned is silent – there, but always silent. On one of my recent treatment days, Ned was there when a nurse told me that thanks to my reconstruction, I now had the breasts of a nineteen year old! I know she meant it as a compliment to offset an otherwise dreadful situation but I wanted to smack her and Ned both. Though my breasts are indeed beautiful, my chest wall, not to mention my right arm is numb. Completely numb. My reconstruction is all for show. When I am in a foul mood, I say my breasts are useless. Ned knows this and doesn’t care. Though I can carry on polite conversation in almost any situation, despite my disease and treatment regimen, Ned is right behind me watching. Case in point – I am a nurse but can no longer work full-time. At a hospital function a few months ago, a pharmacist who didn’t know my background asked me what I did with all my time since I didn’t work. Ned grinned. I told her without any drama, well maybe a little for effect, that when I wasn’t volunteering at a local hospital, I was getting treatment for breast cancer. “Well, you look great!” Ah, yes. I do look great. To tell you the truth the only way I get through conversations like the above mentioned is the satisfaction in knowing that at some time in the not so distant future, when my cancer returns, Ned dies. And I will be rid of him forever. No more lingering around, sitting on my shoulder, going with me everywhere I go. I guess in a way I do get to have the last word when it comes to Ned. Though the irony of the situation when this occurs is  not lost on me. (A version of this post was published at www.engagingpatients.org in June 2014.)]]> 675 0 0 0 23 0 0 PET Scan Today http://www.sherrifillipo.com/2014/09/23/pet-scan-today/ Tue, 23 Sep 2014 16:46:02 +0000 http://www.sherrifillipo.com/?p=705 Complex Carbohydrates Food Sources Whine...whine. So, I got up this morning (without coffee) and drove through the lovely hills of upstate New York and checked in with Radiology. When I was taken back 'on the truck' and an IV started, the radioactive isotopes injected, I was told I needed to lie perfectly still for an hour and that I could not read anything, in any form! Wow! And he left. So I lay there and wondered how long or how short would an hour be for me? And what should I do? Except move. So, I thought I should at least pray for a while. I had tried to have my devotional time before I headed out. I don't know about you but without two cups of black, strong coffee under my belt in the morning, the rapture could occur and I would be like, "Hey, where are we going? What just happened? I'm not awake yet." But I prayed - for many of you, for my son and then before I knew it, I had fallen asleep. Many of you are not surprised. Then I was taken back and pushed and pulled through that CT doughnut of a machine. Those can be long minutes when you wish with all your might that you could know right then and there if they are seeing something - but you can't and you don't. You just lie there and listen to the worst music ever. Afterward, he got me up, handed me some gluten free cookies (don't get me started on that) and out the door I went. I drove back through the hills, clutching the first cup of coffee that I have had in 48 hours like it was gold. Now the hardest part, not the IV stick, not the claustrophobic CT machine but the wait. So since I am radioactive until nightfall, I thought I would post this blog which is a lot of nothing (!) and wait for dinner filled with carbohydrates! I will let you know in a few days the results of the scan...]]> 705 0 0 0 25 0 0 Corning: My Home Away From Home http://www.sherrifillipo.com/2014/09/24/corning-my-home-away-from-home/ Wed, 24 Sep 2014 16:05:44 +0000 http://www.sherrifillipo.com/?p=717 corning   My southern friends often ask me how I am faring "up there in the north." To many of my friends and family, they can't conceive of living above that ole Mason-Dixon line. They are worried that having cancer while living in foreign land must be more than I can bear. Sometimes, I really go for it and say, "Can you believe we live only three hours away from Canada?!" I try to make it sound as dramatic as possible. I am known for that. My southern friends and family heard me complain about a certain southern city I lived in when my cancer was first diagnosed, where the mastectomies occurred, where my first round of chemo occurred, where I fell on my icy deck and had the largest cerebral hematoma anyone had ever seen that didn't require a trip to the Operating Room. The same city that in the spring when all of this cancer tragedy had subsided, I walked out on the same deck and fell right through it - literally - bearing a nasty scar on my shin to this day. I remember screaming to my husband, "Get me out of this damn city! I can't stand it any longer!" And sure enough he did. Because he is that way. And before I knew it many months later, I jumped in my car and drove to Corning, New York. I didn't look once in the rearview mirror at that southern city I was leaving. Oh, the relief I felt that day, I cannot describe. For my southern folks, the picture above is downtown Corning. This is the little oasis that we found ourselves living in when six months into our new apartment, I was diagnosed with terminal cancer. I thought we had left cancer behind in the south. This was to be our fresh start. Yet, as Yogi Berra said, "It was deja vu all over again." But I am here to tell you, the experience  of having cancer this time was a totally different experience. You see, although only a resident of Corning for six months, I already felt like a member of the community. I was working at Corning Hospital (right across the street from where we lived at the time!) and already felt like a part of the hospital team. Because downtown is only about five blocks long, shopkeepers already knew me - I was supported in every way possible. I have never lived anywhere so small - my residences have included  Manhattan, Washington, DC, New Haven, CT, smaller but still larger than Corning places like Raleigh and Winston-Salem, NC. But never in a place where people driving by will call out your name and wave! When I walk up and down Market Street (that's the street in the picture) shopkeepers will wave to me from their stores! I know it sounds like the perfect place and it is in my mind. My stepdaughter came to visit last year, born and raised in Philadelphia, she turned to me and said, "This place is idyllic." Yes! That's the word I had been searching for. I love it here. My heart is here and I have encouraged all of my friends and family to come and visit. Every one that has driven or flown in to visit say the same thing, "This place is wonderful!" No surprise that Rand McNally gave it the title "Most Fun Small Town in America!"  ]]> 717 0 0 0 26 0 0 27 26 1 28 0 0 29 0 0 30 29 1 31 http://www.riverbirchvineyards.com 0 0 32 31 1 The Results Are In http://www.sherrifillipo.com/2014/09/25/the-results-are-in/ Thu, 25 Sep 2014 20:58:58 +0000 http://www.sherrifillipo.com/?p=726 Gin & TonicThe results of the PET scan are in and I have had a couple of conversations today with my oncologist, whom I adore. What I like most about her (besides the fact that she was a nurse and then went back to medical school) is that she is willing to listen to her right brain when she needs to. It was her right brain that told her two years ago that something wasn't right with me when there was nothing to indicate that there was anything wrong except that I continued to complain about fatigue. She talked me into CT scans and the rest, as they say, is history. Today she told me that the PET scan shows that there are two lesions on my liver but because we don't have an old PET scan to compare it to, we do not know if they are old or new. But this is where her right brain kicks in that I appreciate. She said her gut tells her something is brewing, that the current medication I am on every three weeks isn't stopping these two lesions from being 'active.' So the plan is for me to add hormonal therapy to my regimen. It will hopefully take away the "fuel" aka estrogen that might be feeding these lesions. And then another PET scan in 8-12 weeks. If the PET shows activity at that point, I along with my beloved who does not want to be talked about in this blog, will have to decide if I will go back on chemo. Until then, I will continue to ramble here in my blog. Don't worry. I am fine. It is a beautiful day in Corning. I am sitting here doing the very non-southern thing and drinking a G&T after Labor Day. You do know that you do not wear white pants nor drink G&Ts after Labor Day, right?]]> 726 0 0 0 39 0 0 40 0 1 41 0 0 42 41 1 My Homework http://www.sherrifillipo.com/2014/09/25/my-homework/ Thu, 25 Sep 2014 13:55:29 +0000 http://www.sherrifillipo.com/?p=727 Bright sunlight over ocean Everyone has said, "You are handling this much better than I ever would." They don't know that for sure. I believe everyone has a reservoir of strength that is waiting to be tapped for something - climbing a mountain, childbearing, surgery, any number of stressful situations I can think of. But I want to tell you a couple of months ago, I hit a real low. I had come in to the hospital for a meeting and someone in an office yelled out a greeting like they do in Corning, remember? And though I said hello back, I did not go in to the office and chat. Looking back, I am not sure why. And three hours or so later this person was dead. And I began to cry. A colleague to be sure but not someone I was particularly close to. But I cried. And cried.  Long after  my work friends who had known this person for years had stopped crying, I was still crying. Then a couple of weeks later, I was at a leadership meeting and a video was shown of our  hospital construction and I began to cry in the dark. What is wrong with me, I kept thinking. Afterward, when the room emptied,  two of my closest friends and confidants came over and I just wept. One of them said, "I think you need to see someone." And so I did. Everything is so close here in Corning which is why I love it. From dry cleaning to sushi, just step outside on Market Street and start walking. You will get there in no time. So I walked over to this large lovely home, now a counseling center and waited, wondering what I was going to say. "Isn't everyone with terminal cancer supposed to be teary?" she might think. The answer is no! I looked up and there she was. We walked upstairs to her office. Lovely office sitting up in the trees. She was so poised and quiet. So I told her my story of the sudden death of a co-worker and it dawned on me as things often do in a counseling office I suppose, that I came face-to-face with death that day and it extended to my own death. Duh. Her counsel was simple and powerful. This is what she said:
  • Your body is slowing down, preparing itself for death currently through the forgetfulness, the instability in your gait…it will increase and change as you come nearer and nearer.
  • You’ve been pushing it and pushing it and your body is saying, “It is time to focus inward, and to settle yourself.”
  • Your body cannot and should not be trying to keep up with anyone who is healthy. You cannot do it and it is showing you that.
  • It is time to stop taking care of everyone, friends and family, trying to make sure everyone is ready for your death. It is time to focus inward on yourself and prepare for what is coming.
I walked out into the late afternoon back to the apartment with some kind of burden that had been sitting on me, lifted. No more crying like that. In the end, do you know what she told me? Start a blog.]]> 727 0 0 0 33 0 0 34 0 0 35 0 0 36 35 1 37 0 0 38 37 1 Joan Lunden, Call Me http://www.sherrifillipo.com/2014/09/26/joan-lunden-call-me/ Fri, 26 Sep 2014 12:25:56 +0000 http://www.sherrifillipo.com/?p=734 metatstatic ribbon A friend asked me the other day if I would run out of things to write about! Are you kidding me? I will be long gone and will still have ideas sitting in my "draft" box that this website keeps for me. I promised my mother I would not do anything edgy before October breast cancer awareness month (ugh) but standing in line at Wegmans yesterday I knew there would be no holding back once I got home. You see, as I stood there in line, beautiful, bald Joan Lunden stared back at me on the cover of People magazine with the quote, "I will beat this!" It made me so angry I just had to look away. I wanted to speed dial her and set her straight. I imagined she would pick up the phone and I would say, "Joan. Listen, you have it all wrong. You don't get to decide if you will beat cancer - the cancer does." And then I would go on to educate her on cancer that stays in the breast versus cancer that leaves it and what a disservice it is to women and families who deal with the diagnosis of terminal breast cancer and how they might worry that they had not fought as hard as say, Joan Lunden and that's why they were dying. Oh, I've gone and gotten myself started! I will close to say or maybe it is a disclaimer: October is a rough month for women who are living and dying with metastatic breast cancer. I have so much I want to write about but will wait. The ribbon you see above is the ribbon for metastatic breast cancer. I think the colors are befitting.]]> 734 0 0 0 43 0 0 44 43 1 45 0 0 46 0 0 Blog Update! http://www.sherrifillipo.com/2014/09/27/blog-update/ Sun, 28 Sep 2014 00:38:47 +0000 http://www.sherrifillipo.com/?p=756 756 0 0 0 47 0 0 48 0 0 49 0 0 50 0 0 51 50 0 52 http://Winters 0 0 53 52 1 1853 0 0 A Mist That Vanishes http://www.sherrifillipo.com/2014/09/30/a-mist-that-vanishes/ Tue, 30 Sep 2014 15:45:55 +0000 http://www.sherrifillipo.com/?p=760 Djurdjevica Tara BridgeI have been in Manhattan since Saturday having the time of my life. One of my favorite cities, I am fortunate enough to live four hours away so an easy drive (well, until you get about 20 miles from the city and then you can imagine). My first trip to New York was when I was in high school. I fell in love instantly. I thought it was the most magical place on earth.  The hustle, the bustle, the fashion. I still wonder how women trek through the streets of Manhattan in stilettos. We are here as my better half sits on a national advisory board of physicians, nurses, IT folks and so on who come together twice a year to discus patient safety issues. They have been kind enough to let me tag along for a couple of years. This is the group that I write articles for that pertain to patient engagement (for you in healthcare you will learn a lot  by logging on to engagingpatients.org.) I have to admit though that when the meetings are in session, sometimes I am acutely aware of my career being over as I am on the other side of the door. I also often feel this way when my husband comes home from work or a friend stops by for a drink and I want to know all about the things that are happening in the hospital and as you can imagine that's the last thing they want to talk about! So, this morning while these folks are in session, I sat down in my window seat overlooking Wall Street and read my devotional. It never ceases to amaze me how on target some of these are. Today's verse out of the book of James is one of my favorites, "You are a mist that appears for a little while and then vanishes." While that might make some readers sad,  it actually gives me comfort. For you see, no matter how much I want to get out there and grab every last minute of New York (or the world for that matter) I am tired today. So, I am not. I am going to rest and wait until this evening to have dinner and then have conversation with those folks who are behind the closed doors. We are all mist. Knowing that I can't do everything, releases the stress from me allowing me to do some things.]]> 760 0 0 0 54 0 0 Don't Mess With Flossie http://www.sherrifillipo.com/?p=2507 Wed, 30 Nov -0001 00:00:00 +0000 http://www.sherrifillipo.com/?p=2507 flowers

Today being Friday, I must introduce you to Flossie. She is our dry cleaning lady here in Corning and knowledgeable about all things Corning. Since Beloved works in Corning on Fridays, it has become his routine to walk over with the dry cleaning (remember everything is within walking distance) and have a little chat with Flossie. Flossie is a woman who has lived here for a very long time and knows everyone and can give you an oral history on the area if needed. She was the one to warn us last year not to plant before Memorial Day. I, being the anxious southerner that I am, planted well before that and we ended up losing a lot of plants. She simply shrugged her shoulders when Beloved told her and said, "I warned you." Once when he brought back the dry cleaning, I had been scolded by Flossie for giving her a sweater that had petals sown on it  - layers of little cotton leaf-shaped petals that she told Beloved were just murder to deal with. I was so intimidated, I never wore the sweater again...then one fall day I had worn a nice Talbots sweater and when it came back from Flossie's, I was told that she was quite impressed by the craftsmanship in the sewing. Whew. I continued to wear it through the fall. I don't know how she has pulled conversation out of introverted Beloved but she has. Now when he comes home on Fridays and says, "Flossie says...." I stand at attention. Oh, by the way she announced that since Memorial Day came early this year, please wait one week longer before planting. Yes, ma'am. I haven't put a thing in the ground and won't until Saturday afternoon. You simply don't mess with Flossie.]]> 2507 0 0 0 http://www.sherrifillipo.com/?p=3580 Thu, 17 Dec 2015 20:56:03 +0000 http://www.sherrifillipo.com/?p=3580 3580 0 0 0 http://www.sherrifillipo.com/?p=3665 Wed, 30 Nov -0001 00:00:00 +0000 http://www.sherrifillipo.com/?p=3665 3665 0 0 0 http://www.sherrifillipo.com/?p=3693 Wed, 30 Nov -0001 00:00:00 +0000 http://www.sherrifillipo.com/?p=3693 image]]> 3693 0 0 0 Merry Christmas to You All http://www.sherrifillipo.com/?p=3895 Wed, 30 Nov -0001 00:00:00 +0000 http://www.sherrifillipo.com/?p=3895 3895 0 0 0 http://www.sherrifillipo.com/?p=4212 Wed, 30 Nov -0001 00:00:00 +0000 http://www.sherrifillipo.com/?p=4212 4212 0 0 0 http://www.sherrifillipo.com/?p=4264 Wed, 30 Nov -0001 00:00:00 +0000 http://www.sherrifillipo.com/?p=4264 ]]> 4264 0 0 0 There is an Elephant in the Room this Month and It's Pink http://www.sherrifillipo.com/2014/10/02/there-is-an-elephant-in-the-room-this-month-and-its-pink/ Thu, 02 Oct 2014 13:38:19 +0000 http://www.sherrifillipo.com/?p=655 “No one dies from breast cancer that remains in the breast. Metastasis occurs when cancer cells travel to a vital organ and that is what threatens life.” I remember when I read that statement for the first time. It was like the proverbial light went on. Now I knew why I was always irritated when I saw women in pink tutus walking in those “we are survivors” breast cancer races. As well intentioned as both the women and the races are, many of those women who are so excited to call themselves “survivors” really aren’t survivors! Ouch. I know I step on toes by saying it but the truth of the matter is this, if the cancer doesn’t leave the breast, you don’t die from the disease. You get to die from something else. The statement from above is taken from an organization that I would bet many people have never heard of: The Metastatic Breast Cancer Network http://mbcn.org/  whose slogan is, “fighting for treatments to extend life.” Note that it does not say to survive breast cancer or to beat breast cancer because if you currently have metastatic breast disease the focus is on control of the disease and the quality of life that remains. Remember, we know how this cancer book ends. We know who dies in the end.

Vintage ElephantThose of us, around 155,000 living with metastatic disease in the US, aren’t typically the ones in tutus racing through the streets of America. We are too tired, too sick, too tethered by IV tubing to our local hospitals to do much dancing. This is how you can help: To see women who are living and dying with metastatic breast disease as a very different patient population from the women who have experienced ductal carcinoma in situ breast disease (cancer inside the breast). After my double mastectomy, a nurse practitioner once told me, “Don’t ever let a woman who has had a simple lumpectomy tell you that she knows how you feel. Because she doesn’t.”

 Until I was diagnosed with metastatic disease, I did not know that only 2% of the annual cancer fund of $5 billion is slated for Stage IV cancers of which breast metastasis is a subset. It has taken me a while to appreciate the fact that the “pink ribbon breast disease” as I call it is the pretty disease. Metastatic disease is not. It is the ugly disease. We are the group of women who scare the ladies in pink tutus because we are dying from the disease that they are running scared from. We are the women that are ignored by the pink ribbon organizations because we are living examples that you can do everything right and still die from breast cancer. We are the reminders that you can have your screening mammogram every year, without fail, just like I did, and still have invasive cancer diagnosed after your annual mammogram. We make other women uncomfortable. And I believe that is why so infinitesimal is the money given for metastatic disease research. Let me put it another way. Do we really need more money funded for breast cancer awareness campaigns? Who in heaven’s name is not aware of breast cancer? What we need is money funding the disease that is killing 44,000 of us in the US annually. Soon it will be me. Which is why I write and which is why I am asking you to come to grips with the two diseases. And acknowledge that one size does not fit all. You can do all the self-breast exams you want; you can get an annual screening mammogram; you can do everything in your power to thwart the disease but if it is going to get you, it is going to get you. Early diagnosis does not equal survival. Good girls are not the ones who get screened and don’t get breast cancer just as the bad girls are not the ones who get the screenings and still go on to get the disease. We need to shift our paradigms and take a stand that money be shifted as well to finding the cures for the disease. It’s too late for me but not for someone close to you. A future child? A future grandchild? October 13 is dedicated to those of us who won’t get out of this alive - National Metastatic Breast Disease Day.]]> 655 0 0 0 59 0 0 October 13: Metastatic Breast Cancer Today 13 Things You Need To Know http://www.sherrifillipo.com/2014/10/13/october-13-metastatic-breast-cancer-today-13-things-you-need-to-know/ Mon, 13 Oct 2014 13:00:58 +0000 http://www.sherrifillipo.com/?p=692 From the Metastatic Breast Cancer Network (not just plucked from my head):

 

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

 

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

 

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

 

4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

 

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

 

6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms.

 

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

 

8. Young people, as well as men, can be diagnosed with metastatic breast cancer.

 

9. Like early stage breast cancer, there are different types of metastatic breast cancer.

 

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

 

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.

 

12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

 

13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit www.mbcn.org.

]]> 692 0 0 0 84 0 0 1266 http://mstakesme.wordpress.com 0 0 From the National Breast Cancer Coalition's Website: 31 Myths & Truths http://www.sherrifillipo.com/2014/10/08/from-the-national-breast-cancer-coalitions-website-31-myths-truths/ Wed, 08 Oct 2014 13:29:20 +0000 http://www.sherrifillipo.com/?p=746 This entire post comes from the National Breast Cancer Coalition's Website: http://www.breastcancerdeadline2020.org/breast-cancer-information/myths-and-truths/?gclid=CP6yx7TBm8ECFbPm7AodUzAAng "I’s time to move beyond awareness to action. It’s time to peel back the pink to see what’s really happening in breast cancer research, treatment, prevention and cure. Our breast cancer myths and truths are backed by science, documented by credible and trusted sources and chosen because they are often misunderstood by or misrepresented to the general public. We challenge you to become educated, speak up on behalf of women and men everywhere and take action to end this disease. We also call on you to help us spread this message to people you know: friends, family, coworkers, anyone who cares about ending breast cancer. " 31 Myths and Truths Myth 1: Monthly breast self-exams save lives Myth 2: Mammograms can only help and not harm you Myth 3: MRI is better than mammography because it finds more cancer Truth 4: When breast cancer shows up on a mammogram, it may have been in your body for 6-10 years Truth 5: Breast cancer mortality rates are decliningmammogram Myth 6: Mammograms prevent breast cancer Truth 7: We don’t know how to prevent breast cancer Myth 8: Most women with breast cancer have a family history of the disease Myth 9: Men don’t get breast cancer Truth 10: Risk of breast cancer increases with age; 50% of breast cancer occurs among women aged 62 years or older Truth 11: Most people think they have a higher risk of breast cancer than they actually do Myth 12: Everyone's breast cancer is the same Myth 13: Everyone who has a positive BRCA 1 or BRCA 2 test result will get breast cancer Truth 14: The mortality rate from breast cancer is higher for African American women than for Caucasian women Myth 15: In terms of survival, removing the entire breast is better than just cutting the cancer out and getting radiation Myth 16: There are drugs that can prevent breast cancer Myth 17: Once diagnosed with breast cancer, it’s very important to make treatment decisions immediately Myth 18: Second opinions are only for treatment options. Once I know I have breast cancer, I can get a second opinion on how to treat the disease Truth 19: Hormone replacement therapy (HRT) increases your risk of breast cancer Myth 20: With new treatments we can now cure breast cancer Truth 21: You should question your doctor Myth 22: If I am not a scientist, then I won’t be able to understand breast cancer research Truth 23: Your tax dollars fund a significant amount of breast cancer research Myth 24: My Senators and Members of Congress have no role in what happens in breast cancer Myth 25: The media accurately reports breast cancer science Myth 26: All breast cancer research is good because it moves us toward prevention and a cure Myth 27: Breast cancer survivors are too close to the issue to participate in how research money is spent Truth 28: Less than 3% of adult cancer patients participate in clinical trials Truth 29: I can educate myself Truth 30: I can influence what happens in Washington D.C. about breast cancer Truth 31: I can make a difference        ]]> 746 0 0 0 67 0 0 69 67 1 Mammography: What I Bet You Didn't Know http://www.sherrifillipo.com/2014/10/06/mammography-what-i-bet-you-didnt-know/ Mon, 06 Oct 2014 12:56:43 +0000 http://www.sherrifillipo.com/?p=748 amy-robach-300 (2)  There has been a lot of controversy about mammograms in the past few years. Some heralding them as life savers, some wanting them to be done on younger and younger patients and so on. The woman you see here is probably familiar to you. Her name is Amy Robach and she used to be an anchor on NBC's Today Show. Then she moved over to Good Morning America. She recently had her first mammogram and they  found a mass. She is currently seeking treatment. She has stated publicly that the mammogram saved her life. Hmm... Listen to what the renowned breast surgeon, Dr. Susan Love  http://www.dslrf.org/breastcancer/  author of the definitive book on breast cancer entitled,  Dr. Susan Love's Breast Book said in response: “Did the mammogram save her life, as one doctor was quoted as saying? The answer, of course, is we don’t know. While mammography is capable of finding about 26% of cancers at a point where it makes a life-saving difference in the outcome, it also finds many lesions which would never have gone on to be life-threatening and others which will still be life-threatening in spite of early detection and rigorous screening." "The problem is not the mammogram as a detection tool, but the natural history of the disease, which brings us to the crucial point…not all breast cancers are the same. Before a treatment is prescribed or chosen, it is critical that a woman or man knows what kind of breast cancer they have of the roughly 5-7 kinds we can now recognize. There are probably many more kinds that we just don’t know about or know how to recognize yet. The behavior of the cancer is dictated not as much by when it is found as by what kind it is and how that kind usually behaves. This information informs the decisions about treatment. …" "We all need to help tone down the hype that mammograms are the be-all/end-all life-saving tool and stop fueling mass fear that a questionable mammogram is a potential death sentence.” Dr. Loves' book is highly readable whether you have breast cancer or not. What I learned from her interview is that mammography is not as straightforward as the public believes. (photo from People magazine)]]> 748 0 0 0 62 0 0 513 0 0 A Woman with Terminal Breast Cancer - A Model of Beauty in a Paris Photo Shoot http://www.sherrifillipo.com/2014/10/20/a-woman-with-breast-terminal-cancer-a-model-of-beauty-in-a-paris-photo-shoot/ Mon, 20 Oct 2014 13:55:46 +0000 http://www.sherrifillipo.com/?p=752 Today show and sent it to me about a year ago. I thought it was so poignant, so beautiful, so haunting.  Some of you have seen it.   I thought I would just use this video today to remind you that metastatic cancer can strike at any age. Grab a tissue, sit down and watch this video.   [embed]http://vimeo.com/57597999[/embed]        ]]> 752 0 0 0 ]]> ]]> 92 0 0 140 0 0 141 140 0 A Question From My Son http://www.sherrifillipo.com/2014/10/07/a-question-from-my-son/ Tue, 07 Oct 2014 13:14:27 +0000 http://www.sherrifillipo.com/?p=758 gateway to love I have one child - a handsome 23 year old who is finishing up a degree to begin work as a paramedic. He is equally skilled in the kitchen. I think he will make a wonderful catch for someone but I digress. He lives in NC where he attends school so sadly our communication comes from texts, calls and visits every few months. It was last summer when he came to the beach house and after a swim, dinner and a soak in the hot tub, he walked into my bedroom. I was sitting on the side of the bed; he walked over, put his arms around me and said nothing for a long time. It was so good to be near him. I miss him terribly; for many reasons he and I were extremely close when he was growing up. The two years  I spent  homeschooling him, he recently told me were the two best years of his childhood. Wow. That night, he turned to me and asked, "What is it like living between two worlds -  one foot on earth and one foot in heaven?" If you know my son, you are not surprised at the depth of that kind of question. His preschool teacher used to call him her philosopher at the ripe old age of four. Another mentor called him his little theologian. I told him I hadn't thought of it that way but indeed that is exactly how I feel. I really don't sweat the small stuff anymore. I am freed by a lot of the things that you, the reader, are not. I no longer try to envision what living in a nursing home would be like. The stock market has no effect on me. I no longer wonder when I can retire. I no longer wonder what I will look like at 70, 80. I tell people I love them freely. I eat ice cream any time I want. I am much more focused on my movement toward heaven as time slips by and I am very cognizant of every day, of everything.  I experience things so acutely now. The leaves turning this fall have never been more beautiful. The river that runs through out town never lovelier. Every time my son calls, when he texts me that he loves me, I am overwhelmed with love for him, for others, for God. I am not sure how much time I have and yes I do feel like I am living in two worlds. I am at peace with that.  ]]> 758 0 0 0 64 0 0 65 64 1 68 0 0 1038 0 0 Melissa versus Aretha http://www.sherrifillipo.com/2014/10/01/melissa-versus-aretha/ Wed, 01 Oct 2014 12:11:54 +0000 http://www.sherrifillipo.com/?p=766 aretha And I am sure you know by now that she came out in an aqua ball gown with her own band and five back up singers and belted out "Rolling in the Deep" with a little "Aint No Mountain High Enough" thrown in for good measure! Can I just tell you though I appreciate her contribution to music, I can't say as I was a fan. But the audience was electrified.  If you google " Aretha and David Letteman" you will see dozens of article and posts about that song. At the end, the audience jumped up and gave her a heart felt standing ovation. I was really overcome. I felt so fortunate to have been in that room yesterday. This morning, I woke up and turned on Kelly and Michael to see who/what I was missing since this was the  morning that I was hopefully going to be there. Please no one take offense if you are a fan but the singer was Melissa Ethridge....hmmmm...I do believe when God closes the door, he can open up a big, wide window.  And through that window, I heard Aretha sing.]]> 766 0 0 0 55 0 0 56 0 0 57 http://www.riverbirchvineyards.com 0 0 58 57 1 The Source of My Humor and Storytelling? http://www.sherrifillipo.com/2014/10/03/the-source-of-my-humor-and-storytelling/ Fri, 03 Oct 2014 13:56:10 +0000 http://www.sherrifillipo.com/?p=779 Sherri0001-aaaaaa-PIC-1-abcde-ss   I have been asked over the past few weeks where my humor comes from and how I learned to "story tell" as someone called my writing. Well, it may start with the picture that you see here. I am the younger girl in the photo and my sidekick is my aunt, Marie. All of eight years older than me. Old enough to be dating when I couldn't, young enough to take me to the local 7-11 and spend money on me for candy. And oh did we buy candy. My silver filled teeth can testify to that. I was really like the 5th child in line. My mom had me young and she being the oldest had three younger siblings and then came me. Marie being the fourth child,  I am closer in age to her than she is to my mom,  her sister - hence this relationship. Marie is funny. If you don't believe it, ask her to do her "wide-mouth frog" routine. Or her "wishy washy" routine. She was so cool. I would watch her go to football games in the late '60's while I hung back with her mother, my grandmother. I loved to  spend weekend nights with Nannie as I called her.  Though I hated Lawrence Welk, she kept poptarts in the cupboard for Marie and my Uncle Bill and when I was there I could have two if I wanted! Nirvana! I would often sleep in Marie's bed when I visited (when I wasn't in my Aunt Susan's bed - I would go back and forth) and if I could keep myself awake til midnight or whenever she came in, she would tell me the story about  Smokey the Bear fighting forest fires. I have NO idea where she got the idea for that one but over and over and over again I would ask her to tell me that story. And she complied every time without complaint. So maybe it was trying to emulate her through my formative years that laid the foundation for the humor and the writing. All I know is that she along with Aunt Susan are regular readers of this blog and for that, I am thankful.

wishbone

PS: Marie just texted me. Still very cool for a grandmother of four - and she said after she read this post, it reminded her of me coming home with them most Sundays after church. And the first thought I had was, "Oh shoot a monkey!" Which is another phrase she still says (no PETA people, we don't have monkeys in my home state of NC, nor did Marie and I go out hunting them.) Because then I had another memory of fried chicken every week. And because I was the youngest and oh so adorable (!) I got to choose which side of the "pully bone" to choose to make my wish come true. Aunt Marie and Uncle Bill occasionally got irritated that they didn't get to choose, but there are some advantages of being the first grand child. So, we would pull and pull until one of us had won. Oh they were good ole days.]]> 779 0 0 0 60 0 0 61 0 0 63 0 0 66 63 1 Joan Lunden Blog as posted on the Metastatc Breast Cancer Network Website http://www.sherrifillipo.com/2014/10/01/783/ Wed, 01 Oct 2014 23:37:18 +0000 http://www.sherrifillipo.com/?p=783 Joan Lunden, Give Me a Call
I promised my mother I would not do anything edgy before October breast cancer awareness month (ugh), but standing in line at Wegmans yesterday I knew there would be no holding back once I got home. joan lunden You see, as I stood there in line, beautiful, bald Joan Lunden stared back at me on the cover of People magazine with the quote, “I will beat this!” It made me so angry I just had to look away. I wanted to speed dial her and set her straight. I imagined she would pick up the phone and I would say, “Joan. Listen, you have it all wrong. You don’t get to decide if you will beat cancer – the cancer does.” And then I would go on to educate her on cancer that stays in the breast versus cancer that leaves it and what a disservice it is to women and families who deal with the diagnosis of terminal breast cancer and how they might worry that they had not fought as hard as say, Joan Lunden, and that’s why they were dying. Oh, I’ve gone and gotten myself started! October is a rough month for women who are living and dying with metastatic breast cancer. I have so much I want to write about! Stay tuned.
]]> 783 0 0 0 The End is Near http://www.sherrifillipo.com/2014/10/10/the-end-is-near/ Fri, 10 Oct 2014 07:08:26 +0000 http://www.sherrifillipo.com/?p=826 heather (2)

This past weekend the town of Corning hosted its annual marathon wine glass festival. Above you see the sweet faces of my two stepdaughters. One was running and the other injured, is just coming along side her sister at the finish line. They are great young women who have welcomed me into their family with much grace. I love to have them come and visit. The one on the right is the one from several posts back who  labeled the town of Corning, "idyllic."  And I must add one boyfriend who joins in as well. They are three dynamite people and when I sit and have a glass of wine with them, I feel I am young again. They laugh at the stupid things I say. We talk about everything and they tolerate my belting out '70's hits on the radio when we go exploring up in the finger lakes wine region which we always seem to do. They have been so, so patient with me through this blog adventure and especially through the month of October. When something I find obnoxious comes on the television at night, I don't even have to ask their permission to mute the screen. They know I cannot take very much during this month. While their dad, my husband who does not want to be mentioned, the boyfriend and I drank mimosas Sunday morning while we waited on Heather (right) to finish. We noticed a woman near the finish line that held out a bright orangish sign that simply read, "The end is near." It caught me as hilariously  funny as a non-runner and knowing that my own end is near (I didn't need a middle-aged woman holding a sign to remind me!) But she stood there for at least 45 minutes to the point that the dear boyfriend, who is a phenomenal photographer I might add, slipped outside to take her photograph holding the sign. Come to find out in the running world, wacky signs toward the finish line are not uncommon. I just found it ironic and hilarious that she chose outside my restaurant window to remind me of something I already know!  

 ]]> 826 0 0 0 82 0 0 Women of Faith http://www.sherrifillipo.com/2014/10/09/women-of-faith/ Thu, 09 Oct 2014 12:59:47 +0000 http://www.sherrifillipo.com/?p=859 Cross under the water

I saw my oncologist today. She and I are  women of  faith. When we are alone, we discuss the human and spiritual dimensions of this disease and where it is taking me, my husband and my extended family. I am so thankful for her. She is young and wise and takes all the time I need when I am struggling. We have both been tearful together; we pray for each other. I am deeply blessed to have her overseeing my care. But when I say faith, I know that means different things to different people. I feel I owe it to you my family and friends to explain what I mean. Yes, I grew up in the south where some would say, it's easy for you to claim faith, as everyone 'down there' goes to church. I agree that many do go to church but as a minister once said, "walking into a church doesn't make you a Christian anymore than walking into a garage makes you a car." I heard that as a young person and thought it was funniest thing I had ever heard at the time. These are the things I believe:
  • I believe there is a  God who orchestrated the heaven and earth. I am not hung up on evolution.
  • I believe the world has fallen into sin from the very beginning. I am not hung up on a real or an extended six-day creation.
  • I believe that for every sin, there must be a payment for that sin (if you hate that word, substitute 'wrongdoing').
  • Until God sent his son, Jesus, to be the ultimate payment for Sin (any and all and everyone's) there was a separation between God and man.
  • Christ came, lived and then died for our sins. Every last one of them. Which is why we no longer bring birds, bulls, calves to the altar.
  • I believe he arose after three days. I really, really do. An actual resurrection.
  • Christ is the bridge between God and man.
  • I believe that as the scripture says, that He has gone to make a place for me (for me!) in heaven. I can't wait to see what my room looks like in that mansion. I'm thinking a fireplace in my bedroom with a Siamese cat sleeping at the foot of my bed, just waiting on me. We'll see!
  • I do believe in an actual heaven and actual hell. No, I do not believe that everyone will go to heaven.
  • No, I do not believe that there are many ways to heaven through many different spiritual paths.
  • Going to heaven is easy. The only thing you have to do is accept that you are a sinner (To me that is easy as I have done SO much wrong in my life) and that you need to be forgiven for your sins. I don't know  about you but I would rather trust/acknowledge that Jesus is my payment rather than the herd of cattle I would have to bring to the altar way back in the day. And then through prayer, ask Him to be your savior.
  • When I pray, I am praying to the author of the universe and I believe that He is listening.
  • Does this confession and acceptance as Christ as savior make your life easier? No.
  • Does this protect you from all harm and disease? Again, a big No.
  • Will believing help you get through all of the disease, disappointment, disillusion of the world? A big yes.
  • Is it ever too late to become a believer? Absolutely not.
  • Are there any sins too horrific to be forgiven for? No.
I feel better just letting you know where I stand. He is what gets me through the days. He is who I cry out to. He is who gives me spiritual comforting that weaves with the human comforting I get from my husband, my friends and my family. In this day and age of diversity and doing your own thing, I know it all seems square. I  get it - assurance of salvation.]]> 859 0 0 0 70 http://www.riverbirchvineyards.com 0 0 71 0 0 72 70 1 73 71 1 74 0 0 75 74 1 76 72 0 77 76 0 78 0 0 79 78 0 80 0 0 81 0 0 83 0 0 1036 0 0 My Golden Girls http://www.sherrifillipo.com/2014/10/14/some-friends-are-silver-the-others-gold/ Tue, 14 Oct 2014 13:35:56 +0000 http://www.sherrifillipo.com/?p=888 three glasses of champagne flutes   I am off this weekend to see two childhood chums. Between the three of us, we have not had a lot of down time. Between the three of us we have 92 years of marriage logged under our belts six college/advanced degrees, each of us has one child a piece. That to me has always been  interesting to note. One came by surprise, one by adoption and one through perseverance.  We wouldn't trade them. We grew up in the 60's when lunch was 30 cents, where we spent a lot of time outdoors and a lot of time talking about boys. One friend I met in the first grade. She was THE popular girl with long wavy black hair. She was the 'girlfriend' of the most handsome six year old I could imagine back then. (We didn't know Donny Osmond at that point.) She took dance lessons of which I coveted and later as a young adult had to ask forgiveness for as I had buried that covertness in my heart for a lot of years. The only dancing I did was when I took the trash out or when Soul Train came on Saturday afternoons. I remember in the second grade while learning mythology (why were we learning mythology when the Viet Nam war was going on? I still don't know). She was chosen as Helen of Troy (I should have known). I was back-up Aphrodite. "Oh" but the teacher said, "She is the goddess of love and beauty!" Like I didn't know that I was still second fiddle. But my friend was never one to taunt her first grade fame. She is and has always been modest. The other friend, I met in the fourth grade at the water fountain. She came careening around the corner and stopped. She looked at me and said,  Don't you just hate it when your slip hangs out beneath your dress?" I thought, "Who are you,  and I am not sure I even own a slip!" And she has been my friend ever since and continues to pull at her slip. I love them. We survived being bussed across town back and forth every two years. And though our closeness has waxed and waned as all long term friendships do, breast cancer for two of the three of us has cemented our middle years together.  I love them both. We are three very different people but we share a common southern background that no one can take from us. Sadly, we  recently came together for one of our mother's funerals. It was a mix of happy and sad. We hadn't all been in the same room in 15 years? I  am just guessing. I am a firm believer in the saying that new friends are like silver, the old ones gold. They are my 'golden girls.'  ]]> 888 0 0 0 85 0 0 Sabrina Has Left The Building http://www.sherrifillipo.com/2014/10/15/sabrina-has-left-the-building/ Wed, 15 Oct 2014 18:04:43 +0000 http://www.sherrifillipo.com/?p=914 colorful jelly candies in bowl isolated on white   When I return for my next infusion at the Cancer Center,  my nurse of two years will not be there. For two years, she and I have had a date every third week for the better part of a morning (or afternoon). I met her two Thanksgivings ago when it was time to start chemo again. I remember staring out a window, teary-eyed and in disbelief when Sabrina walked into my cubicle. I turned around to meet her and when she saw me weepy, she hugged me right off the bat. Little did I know that Sabrina does not do that very often. I don't think that she realized at that moment that she was staring into the eyes of someone with newly diagnosed metastatic disease and when I reminded her, her eyes conveyed a more knowing and sympathetic look. My second port of which she got the privilege of accessing was far more tender and so swollen as compared to my first one that I didn't think I would make it through that morning but I did. Thanks to her wicked sense of humor and her tenacity. In Virginia, I was used to lying down to have chemo and here, there is only one bed and many recliners. Although she didn't fully understand why I was so attached to that one bed, she made sure that if it was within her power, she would have that bed ready for me. A true patient advocate. And seeing someone every third week, one gets to know someone very quickly. And she and I became fast friends both as women but also as nurses.  She said one of the toughest things she has done in her career is break the shell of my better half but like I say, her wit and her zaniness, even he couldn't resist. We became a trio. When I went through my rough patch after my colleague died (written about several posts ago) I cried a lot that day during my infusion. It was tough on her I think because I have been pretty upbeat throughout these past two years but that day she was stressed because I was stressed and I continued to think what a great and empathetic nurse she was. But as in life, all good things must come to an end. She once told me she didn't look forward to my demise as we have become so close. And then she told me last month that she had accepted an offer in another healthcare organization. I told her based on my last PET scan, she was getting out just in time. Our humor is that way. I will really miss her and am getting all choked up as I write. But I know she reads this blog - she affectionately calls it stalking me. So, Sabrina, thank you for taking such good care of me - for meeting all my needs. Thank you for not holding back the candy when I needed it. I will miss you dearly.]]> 914 0 0 0 146 0 0 Metatstatic Breast Cancer Alliance: October 2014 Executive Summary http://www.sherrifillipo.com/2014/10/16/metatstatic-breast-cancer-alliance-october-2014-executive-summary/ Thu, 16 Oct 2014 15:03:42 +0000 http://www.sherrifillipo.com/?p=918 Breast cancer awareness ribbon woman head composition.   Today's post comes from the  Metastatic Breast Cancer Alliance www.mbcalliance.org October 2014 Executive Summary entitled, Changing the Landscape for People Living with Metastatic Breast Cancer.  I know some of what you will read, I have mentioned in previous posts but this is so important. Thank you for indulging me during the month of October: "A greater understanding of what MBC is and how it differs from early stage breast cancer is needed among patients, their families and healthcare providers, researchers, and the public.
  • The focus on "fighting" and "beating" breast cancer has led to the creation and dominance of a breast cancer "survivor" which masks the reality that women who have had early stage breast cancer can develop metastatic disease.
  • The focus on screening and survivorship can stigmatize patients who experience a recurrence or are diagnosed at stage IV - they may be perceived to be at fault for the cancer's progression.
  • The effects of public and professional misconceptions or lack of understanding about metastatic breast cancer  can negatively influence decisions made by patients and their doctors regarding treatment and quality of life.
  • More can be done to build the understanding of  healthcare providers about how to discuss treatments and quality of life, including palliation of their patients."
This quote resonates with me so much:   “We did nothing wrong. Our medical team did nothing wrong. Metastatic breast cancer happens...at any time...regardless of your age, whether you did chemo[therapy], radiation, had a mastectomy, had a bilateral mastectomy, ate well, took vitamins, exercised regularly, prayed, had positive thoughts, had negative thoughts, got regular mammograms, did self- exams religiously, had a tiny stage 1 primary tumor, or a stage 0 primary tumor, or a stage 3 primary tumor, or never even had primary breast cancer. It doesn’t matter.” —MBCN website (emphasis mine).      ]]> 918 0 0 0 88 0 0 87 0 1 86 0 0 Now, Meet My Silver Girls http://www.sherrifillipo.com/2014/10/17/now-meet-my-silver-girls/ Fri, 17 Oct 2014 12:11:53 +0000 http://www.sherrifillipo.com/?p=933 Stacks of silver money coins isolated over the white background   Lest you think from my "golden girls" post that those two are the only ones I care about, you would be wrong. I want to introduce you to my two silver girls. These two I have been friends with for all of five years. I met them both when I lived in Connecticut. I hold them dear to my heart. They are both physicians which impresses the socks right off of me. Women who were able to navigate medical school back when it wasn't shall we say so 'diverse'? I marvel at their intellect. But they are also a boatload of fun. The first friend is an epidemiologist and I got to know her when I worked at Yale-New Haven Hospital. She and I co-led the hospital hand hygiene initiative which sounds like a real yawn unless you had sat through our presentation/lecture. By the time we had taught around 300 people, we had our song and dance down pat and the audience loved us, if I do say so myself! If being a physician isn't impressive enough, she is also from French descent and speaks it fluently. She is an avid runner and has a physique that I will never have. And she loves a good strong margarita. Yes, she sounds almost perfect! My other friend, also a physician, is the Director of Patient Safety at the hospital association where I also worked. She has a keen mind for details and can coordinate huge programs to accommodate members from all 28 hospitals across the state. She always has a kind word and has a way of navigating through difficult work situations with aplomb. She is elegant and thoughtful. The best part about her? She, too, loves a good margarita! I feel like I am the luckiest girl in CT when we three get together. Over the last year, I had been driving back into New Haven to volunteer at Yale about once a month. To be frank, I was not ready to leave Connecticut when we did but that's life. I believe it also symbolizes "health" to me as I was diagnosed almost immediately after moving from CT to Virginia.  So, I go back. I walk the shore across the street from my former home on the Long Island sound. I collect seaglass as I walk. I drive down and  get harassed at the local Italian restaurant by two of the long time bartenders. If you let them harass you long enough, they will pour you a glass of wine on the house, so why wouldn't I just sit there and take it for a few minutes? And then I go out with my two silver girls. We have gone to different places but the one that I think we all three lean toward is an upscale Mexican restaurant near the hospital. (If you are ever there, it is Geronimo, their website is: geronimobarandgrill.com ) They serve the best margaritas and some of the best Mexican food I have ever eaten. We typically get a high top table  near the bar, and order the guacamole made tableside and along with the margaritas and talking to those two, I think I am in heaven. In fact, if heaven were like that, I would be perfectly happy. Since I am at Yale just about 48 hours when I go, we can get together once. So we end up talking at rapid fire speed to get in all that we need to get in before I leave. These two are precious to me because although I didn't grow up with them, they cared for me long distance during the dark days of surgery and chemo in Virginia. They sent cards, cookies, emails. One of them decided I needed some spring in my long dark winter here in NY during my second series of chemo and sent me a half dozen jewel-toned scarves to wrap up in. They are too good to me. So the three of us are figuring out how to get together. I am having more difficulty making the 10 hour round trip to Connecticut. I think they may be coming to upstate New York  before the holidays. I can hardly wait. Though there are no restaurants to compare to Geronimo here, I am known for being able to make a mean margarita!    ]]> 933 0 0 0 91 90 1 90 0 0 89 0 0 Boston Globe: Expand conversation to include metastatic breast cancer http://www.sherrifillipo.com/2014/10/23/boston-globe-expand-conversation-to-include-metastatic-breast-cancer/ Thu, 23 Oct 2014 13:02:53 +0000 http://www.sherrifillipo.com/?p=935 mbcn Anne Morris who is the chief executive officer of Susan G. Komen Massachusetts wrote a powerful article in the Boston Globe today of which I have taken an excerpt. Some days I have hope that metastatic breast disease will get the coverage it needs. Today is one of those days.
According to a recent survey, it’s clear that societal awareness of metastatic breast cancer shows a lack of understanding, and highlights the need to move beyond the current conversation. In fact, 63 percent of Bay Staters surveyed know little or nothing about metastatic breast cancer, while 70 percent think advanced breast cancer is curable. Additionally, 47 percent think cancer progresses because the patient either didn’t get the right treatments or didn’t take the right preventative measures (emphasis mine). Given all this, it’s no wonder those living with metastatic breast cancer can feel excluded from the larger dialogue and emotionally unsupported. This lack of understanding on the part of the general public excludes these women, and their stories, from the daily dialogue. Women in Massachusetts and from all across the nation are at risk due to this huge communication gap when it comes to metastatic breast cancer. Helping those living with this dreadful disease feel like part of the conversation is an urgent matter. Metastatic breast cancer isn’t curable. In fact, the average survival time following a metastatic breast cancer diagnosis is approximately three years, and even lower among certain ethnicities. It remains the second leading cause of cancer deaths among women today. According to a study published in the journal The Oncologist, roughly one in three — nearly 30 percent — of women diagnosed with early breast cancer will eventually be diagnosed with metastatic breast cancer. Those of us who know someone diagnosed with breast cancer, even if it’s not advanced, need to heed the call to expand our knowledge of the disease and to understand the profound emotional toll that patients go through. These patients have different needs and different struggles than those diagnosed with early stage breast cancer."
]]> 935 0 0 0 97 0 0 98 97 1 99 0 0 100 99 1 101 98 0 My Ya-Ya's: Somewhere Between the Golden Girls and the Silver Girls http://www.sherrifillipo.com/2014/10/21/my-ya-yas-somewhere-between-the-golden-girls-and-the-silver-girls/ Tue, 21 Oct 2014 12:06:42 +0000 http://www.sherrifillipo.com/?p=953 sisterhood It's life. You don't figure it out. You just climb up on the beast and ride. - Rebecca Wells[/caption]   One last group of women that need to be brought forward and recognized are my ya-ya's. Who? Do you remember the 2002 movie starring Sandra Bullock called The Divine Secrets of the Ya-Ya Sisterhood? I bet many of you do. Well, at Cone Hospital there were five of us in perioperative leadership that constituted the ya-yas. One was the director of the Operating Room. She had been working in the OR  many years prior to my arrival and she was the one responsible for giving me a weekend option position when I had my son, allowing me to work Saturday and Sunday nights and therefore I was home Monday - Friday to care for Jim.  And for that I will always be grateful. She was fun and happy and when she led a meeting that she  felt was getting out of hand she had a hallmark saying.  She would open up her arms and pull her hands toward her chest and repeat, "Come on people. Come on back to me." It worked every time. I even do that now in meetings and think of her each time! The second ya-ya was the Director of the Recovery Room, known as the PACU to us. She is small and feisty like my mother and I often told her she looked like my mom as well. She was the one if there was some disaster brewing in the hospital, all you needed to do was page her and add "911" to the call-back message and she came to the rescue. When we would all drive together somewhere, she was the one screaming for us to slow down when anyone else was driving and if she was driving, she was a big believer in no left turns (she made that concept popular before UPS did!) The third director was tall, thin and impeccably dressed in Talbots, head to toe. She had the unfortunate job of being at the hospital at 5:00am or before as she was the director of  the pre-operative department. (Someone had to get everyone ready prior to a 7:30am OR start, right? Well, her team did it.) By the time I arrived to work some days, she had already worked a half day and was ready for lunch! This ya-ya had a quiet disposition but if any surgeon tried to ruffle her feathers, she could take him down in an instant. Some surgeons went months trying to ignore her in the department. She considered that a victory! The last ya-ya was my partner. While I was the clinical specialist in the OR, she was the specialist in the pre-operative and post-operative phases of surgery. Together we educated, oriented, taught courses, updated standards, wiped the tears of many an orientee and  we were the support team that backed up the three directors mentioned above. I call her "Country Mouse" and she calls me "City Mouse." Do you remember that children's story? Well, to this day she will email me or text me and start with: "Mouse"....... Five of us. People told us in the hospital that we ran in a pack - five long, white lab coats flapping in the wind as we would put out one fire here, another fire there. At lunch time, one of the ya-ya's always paged the other four and we would meet in someone's office and off we would go to the cafeteria together. I guess we did run in a pack, didn't we? We weathered marriages, divorces, children, grandchildren, illnesses, diseases. As the world in that large five hospital system changed and swirled around us, we were "tighter than ticks" as they say down south. I was the one who broke up the group when I left and moved to Connecticut. When I then moved to Virginia, and was diagnosed so quickly, they packed up a car and drove to spend the weekend with me. We had a ball - laughing and reminiscing. One of the ya-ya's bought a pair of stilettos while there (she was always sporting 4" heels) and I bought a mink stole at a vintage shop. That night at dinner I put on the heels and the mink and sat on my back porch with them while we had cocktails. Nothing was too dumb to do around those women. We had been through personal and professional hardships and there were  no fronts to keep up. God is funny. The new person who took my position so reminded me of myself 20 years prior, it was amazing. Passionate about the OR, long ponytail swinging when she walked, even staff in the OR told her, "You sure do remind me of Sherri." She says it pleases her. It certainly pleases me.]]> 953 0 0 0 93 0 0 95 http://www.theonlinephotographer.com 0 0 96 95 1 One Out of Eight Will Get Breast Cancer? What I Bet You Didn't Know http://www.sherrifillipo.com/2014/10/22/one-out-of-eight-will-get-breast-cancer-what-i-bet-you-didnt-know/ Wed, 22 Oct 2014 11:59:43 +0000 http://www.sherrifillipo.com/?p=961 Breast Cancer Word Cloud Concept in red caps Dr. Love states: "The one-in-eight statistic doesn't accurately reflect the average woman's breast cancer risk. Age is the most important risk factor for breast cancer. That means the older a woman is, the greater her risk of developing the disease. Statistics from the US National Cancer Institute show that a woman's chance of being diagnosed with breast cancer by age is: Ever  is lifetime risk. This means a woman has a one-in-eight chance of getting breast cancer after the age of 70 (emphasis mine). These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower, depending on a number of factors, including her family history, reproductive history, race/ethnicity, and other factors that are not yet fully understood. "
 
 ]]> 961 0 0 0 94 0 0 Dr. Susan Love's Take on the "October Pink Tsunami" http://www.sherrifillipo.com/2014/10/24/dr-susan-loves-take-on-the-october-pink-tsunami/ Fri, 24 Oct 2014 11:53:45 +0000 http://www.sherrifillipo.com/?p=963 Seamless pattern with pink waves I read Dr. Love's blog http://blog.dslrf.org/ today and thought that her words were powerful.  This is just a portion of  the blog:
 In addition, many companies agree that supporting breast cancer research and awareness is good politics and good business. Sometimes these well-meaning efforts, such as the recent pink drilling bits for the cure, can appear misguided, but that does not mean that the people who donated the money had nefarious motives or that the money will not be well spent. As we all compete for the public’s attention and dollars, we sometimes forget that this is not a race with just one winner; it is a team sport. There are many ways we can save the lives of women and men with breast cancer, whether it be by helping them get diagnosed and appropriately treated, or by focusing on research into possible causes, be they environmental, lifestyle, or genetic. There is no lack of areas that need money and serious study. For example, we don’t even know the anatomy of the ducts in the breast or exactly how breast cancer starts! When the NFL is wearing pink, it’s pretty clear that, collectively, we have achieved awareness (emphasis mine). We need all the organizations with their different perspectives to focus on their missions while joining in a collaborative effort to find the cause and ways to prevent breast cancer. Because the end goal, a future without breast cancer, is one we all can agree on."
]]> 963 0 0 0 102 0 0 Dancing to Different Music http://www.sherrifillipo.com/2014/10/27/dancing-to-different-music/ Mon, 27 Oct 2014 14:40:15 +0000 http://www.sherrifillipo.com/?p=1024 (photo from datacenter. courier-journal.com) (photo from datacenter. courier-journal.com)[/caption] Over the weekend I read an article in USA Today With fewer choices left, cancer patient turns to mom and realized it was about the young woman I highlighted a couple of posts ago - the  video post of the beautiful young woman who had gone to Paris and been professionally photographed. In that video, she was also interviewed and discussed her diagnosis of Stage IV breast cancer. This video is about a year old. The article I read showed a very different person. The woman in the article, the same woman in the pink chiffon dress in the video, is in a very different place now. There were few things I noticed:
  • Jill told her oncologist that she was losing strength and did not want to continue her chemo. Her oncologist "listened" but then suggested that there were other chemo regimes that they could try.
  • Jill listened and then had to say to her oncologist, "What if I said I'm just done with chemo altogether?"
  • Jill and her husband are not in agreement with her desire to stop treatment. She says in the article, it is their only source of "contention" as she calls it.
  • I was surprised when she said in this article that, "it finally hit me that I am going to die of cancer..."
  • Her mother lives out of town but is planning to move in with Jill at the end. Her mother stated she did not want to move too soon so as not to alarm Jill in thinking that she has "lost all hope."
In reading the article, it made me feel sad. As close as Jill, her husband and her mother are, when each of them speaks, everyone is hearing something different. And when you add her oncologist into the mix, it becomes four very caring people, all on a different page.  They seem to be dancing around the obvious and I understand it. I really do.  ]]> 1024 0 0 0 104 0 0 Chemo Comes Calling for the Third Time http://www.sherrifillipo.com/2014/11/24/chemo-comes-calling-for-the-third-time/ Mon, 24 Nov 2014 14:13:09 +0000 http://www.sherrifillipo.com/?p=997 Cowboy   I knew in my gut (no pun intended) that when I had the PET scan in October that the one in December would show further activity and that chemo would be my Christmas gift one more time. I am on some sort of cosmic two year cycle. But my oncologist caught me off guard Friday night when she called to talk to me and to ask me how I felt about going ahead and starting chemo the same week of the scan. I have felt this coming for a couple of months. Look at this odd timeline:
  • I was diagnosed in fall of 2010, started chemo #1 December 2010.
  • Then it spread in fall of 2012 and chemo #2 started in December 2012 (anyone else picking up on this little trend?)
  • And so, I just had my scan in fall of 2014 and guess what? Chemo #3 starts in, you guessed it, December 2014.
Well, at least I am consistent. This is what I know about the last tool in my oncologist's arsenal: This chemo called kadcyla (ado-trastuzumab emtansine),  is supposed to be a bear if it is taken on its own. Luckily it is tamed somewhat if you are taking a drug called trastuzumab which I have been on every third week since 2012.  (Aren't I the lucky one?) Kadcyla does not cause hair loss. I will be the judge of that since this would be the third time I would be going  bald and vain as it sounds, this was going to be the deciding factor whether I did chemo #3 or not. Wait a minute, do you think my beloved oncologist is lying to me? Nah, I don't think she has ever lied in her life. As I have called a few folks over the weekend to tell them, it has occurred to me that many people don't know that there are many kinds of chemo - that chemo is a generic term and is not the cancer drug that everyone takes no matter what the disease. Just a clarification for those that might think that as well. This will be the third different chemo that I will be receiving. As a chemo stops working, in metastatic disease, another chemo is tried. The goal is to keep the cancer at bay as long as possible. Curing it is not. So when one fails, you move on to another one. At some point, the arsenal is used up as in the case of Elizabeth Edwards. So, here we go. As they say, "This ain't my first rodeo ."]]> 997 0 0 0 156 0 0 One Last Word to End Pink October Month http://www.sherrifillipo.com/2014/10/31/one-last-word-to-end-pink-october-month/ Fri, 31 Oct 2014 13:30:17 +0000 http://www.sherrifillipo.com/?p=1016 Breast cancer awareness ribbon woman head composition. “We did nothing wrong. Our medical team did nothing wrong. Metastatic breast cancer happens...at any time...regardless of your age, whether you did chemo[therapy], radiation, had a mastectomy, had a bilateral mastectomy, ate well, took vitamins, exercised regularly, prayed, had positive thoughts, had negative thoughts, got regular mammograms, did self- exams religiously, had a tiny stage 1 primary tumor, or a stage 0 primary tumor, or a stage 3 primary tumor, or never even had primary breast cancer. It doesn’t matter.” —MBCN website (emphasis mine).  ]]> 1016 0 0 0 My Periwinkle Palace http://www.sherrifillipo.com/2014/10/28/my-periwinkle-palace/ Tue, 28 Oct 2014 13:07:47 +0000 http://www.sherrifillipo.com/?p=1018 periwinkle (2)   We bought our beach house on the outer banks of NC two years ago and for some unknown reason, I named it my "periwinkle palace." It is periwinkle colored but it is not a palace, except to me. Our refuge. We try and get there about once a month with an extended stay in the summer and at Christmas. The outer banks as most of you know is abbreviated as OBX. And for some, Christmas is abbreviated XMAS. Am I the only one who thinks this would be a neat license plate:  OBXMAS. No one in my family, or extended family (and you know who you are) thinks it's very clever. Well, I do.  I am hoping I get this license plate for Xmas but I doubt I will. At any rate, by the time the tiny yellow butterflies start to flutter on the beach, it is September and a reminder that we will get "our" beach back soon. We always say to ourselves, "go home and put the kids back in school...give us back our beach!" Snobby I know but really that's how the locals feel and we count ourselves as such. Heck, we get the "local's rate" on food depending on the restaurant and the day of the week. Bet you didn't know there was such a thing! I have a favorite bartender, yes I know, I really have many but this one is my most favorite because he and I have had many a serious talk while I have  had dinner and/or a drink at his bar. When I am alone during the week down there, I jump in my golf cart (!) and drive across the street to eat with him - my buddy. He calls our beach area, "the island of misfits" which is true and adorable. All you have to do is go and visit in November or December and take a look around. The folks look interesting and disinterested all at the same time. I love to go in the winter where we can all sit at the bar and the tables behind us are all empty! "Just us locals," I like to think. It's cold and windy and dark and the drinks flow freely. No kids, no sunburns, everything is slow and wonderful there that time of year. I am especially looking forward to Christmas this year. The week before Christmas my sister/brother-in-law are coming with 2,3,4 nieces/nephews (the number is fluid). And  my parents will come Christmas day bearing food from their Christmas Eve soirée. (My nieces and nephews all believe that "Mama Jane's" potato salad rocks.) December 26, the (step) kids come - I hate that word 'step' but anyway....... and it will be a house packed with movies, laughter, card games (my niece is a wicked game player - if she wants to challenge you to a game - any game -  run away and say no!) So much fun. I am so blessed. And I don't take a minute of it for granted.]]> 1018 0 0 0 105 0 0 106 0 0 107 105 0 108 106 0 109 108 0 110 109 1 METAvivor: Listen to What These Wise Women Have to Say http://www.sherrifillipo.com/2014/10/29/metavivor-listen-to-what-these-wise-women-have-to-say/ Wed, 29 Oct 2014 12:57:40 +0000 http://www.sherrifillipo.com/?p=1038 1038 0 0 0 111 0 0 112 111 0 113 0 0 Up in the Trees http://www.sherrifillipo.com/2014/10/30/up-in-the-trees/ Thu, 30 Oct 2014 13:08:41 +0000 http://www.sherrifillipo.com/?p=1042 john and simon By the end of the day we have worked our way over to wait by the door for "the one who does not want to be mentioned in this blog" to get home from work, so we can have some fun. It has taken me a long time to feel ok about not getting a whole lot done on any given day. But I am ok with it. I don't fight it. I just go along with it. I'm like a cat in a shoebox - perfectly at peace watching the world go by.]]> 1042 0 0 0 114 0 0 115 0 0 Breast Cancer 101: Part 1 http://www.sherrifillipo.com/2014/11/14/breast-cancer-101-part-1/ Fri, 14 Nov 2014 14:07:12 +0000 http://www.sherrifillipo.com/?p=1052
  • There are several types of breast cancer but the two you will most likely read about  is either ductal carcinoma in situ (DCIS) which means it is sitting inside the milk duct and has not invaded any other tissue. Invasive ductal carcinoma (IDC)  means the nasty bugger has invaded the surrounding tissue.  It has worked its way outside of the duct.
    • Diagram of breast cancer
    • Once the cancer has been determined IDC or DCIS, it is "staged."   This assists doctors (along with other things) in determining treatment options.
      • Stage 0-1 means the tumor cells have been confined to a limited area
      • Stage 2A and 2B means that the tumor is still growing but has moved its way to the lymph nodes.  A versus B denotes the size of the tumor and whether or not it has invaded the lymph nodes. For more in depth reading on this, click on http://www.nationalbreastcancer.org/breast-cancer-stage-2
      • Stage 3A, 3B, or 3C means the tumor has extended  beyond the immediate region of the tumor itself and may have invaded nearby lymph nodes and muscles, but has not spread to distant organs.  For more information, http://www.nationalbreastcancer.org/breast-cancer-stage-3
      • Stage 4 means the tumor has spread to distant organs. The most common organs for breast cancer to spread to are the lungs, liver, bone, and brain.
    Next week, I will add more information but don't you think this is enough for one day? So, for me I had bilateral (both) IDC breast cancer meaning both tumors had begun to spread into the surrounding breast tissue. I was staged at the time as  2A, one with spread to a node, the other with no spread.  Knowing where I ended up, I bet you are surprised aren't you?]]>     1052 0 0 0 139 0 0     An Important Person I Missed When Talking About The OBXMAS http://www.sherrifillipo.com/2014/11/03/an-important-person-i-missed-when-talking-about-the-obxmas/ Mon, 03 Nov 2014 13:57:24 +0000 http://www.sherrifillipo.com/?p=1055 kathy (2)

    My sister is a good cook and extremely handy. When she arrives, she is bearing all kinds of good things to eat - especially the 'top of the stove' cookies that we ate as kids until we made ourselves sick. Did you make them when you were young? In our house, we always had the ingredients around - even if we didn't have other things to eat (cocoa, milk, butter, oatmeal, peanut butter and sugar). The first time my husband ate them, he went crazy. He prays for them now every year. She does not disappoint. She also quietly goes around my house, tightening loose things, hammering loose boards - she notices things I do not because she is an architectural restorer by trade. Every time she leaves, my kitchen is stocked with snacks and the house is in better shape. For the past two years, it has been my husband, me, my sister and parents - a smaller gathering than we have ever had but it has been peaceful. We took our time opening gifts, ate dinner slowly and had a really great time.  I hope my sister will attend the larger Fillipo gathering this Christmas. It will be a different day for sure but if the weather is good, we will still make our way to the water, Manhattans in hand.]]>     1055 0 0 0 116 0 0 117 116 0 118 117 0 119 0 0     TSA Adventure http://www.sherrifillipo.com/2014/11/04/tsa-adventure/ Tue, 04 Nov 2014 15:13:18 +0000 http://www.sherrifillipo.com/?p=1065 Single black fingerprint - simple monochrome image I gave myself ample time because twice now I have been to Rochester and have lost GPS capability and gotten lost once I reached the city. So I wanted to make sure that I did not waste  a trip for nothing thinking that TSA folks probably aren't the most flexible people in the world. When I arrived, I thought I was late to a party. There were a dozen people already waiting (I was smart enough to have gotten an appointment but I didn't feel like it would make much difference looking at this crowd.)  I waited a half hour while all these rough and tumble men in the waiting room talked about their war stories in traveling, each one trying to out do the other. I  thought about jumping into the fray and blowing them all away with my travel stories but I demurred. When it was my turn, I walked into an office where the clerk had a computer, I had a monitor and off we went. I had to verify and re-verify my identify, all the names I had ever used. I had to type in my social security number twice (she is sitting there with all this information - I think it was just a test to make sure I knew everything??) Then I was fingerprinted - all ten of them. And finally I had to read the monitor and affirm what I had already done prior to my arrival. Oh yes, I had already completed the pre-check form at home and it had been emailed to them. I had to verify that I had not been convicted of a crime etc. etc and then I had to confirm that I was not mentally insane. I sat there for a moment, thinking, "Well, sometimes I feel like I am losing my mind." But trust me when I tell you she wasn't the type that wanted to hear about anyone's cancer saga, so I looked her straight in the eye and said, "I am not insane." I was then shown on the screen one last statement and I had to verify it with signature. It stated something to the effect, "If after 48 hours of leaving this office, you find yourself mentally insane, you must notify this office."  I thought, "You know  - you would be the first person I would call. Forget my husband, my mother, my oncologist, darn it all - I will call you, TSA lady. Can I have your direct dial number?"]]> 1065 0 0 0 120 0 0 121 0 1 122 0 0 Marcia Strassman http://www.sherrifillipo.com/2014/11/05/marcia-strassman/ Wed, 05 Nov 2014 15:41:32 +0000 http://www.sherrifillipo.com/?p=1074 arrives at the ATASHall of Fame Committe's 20th Annual Induction Gala   Do you remember the actress Marcia Strassman? If the name is not familiar to you, if you were watching TV in the '70s like I was, she played the wife on Welcome Back Kotter. She was also in the movie Honey I Shrunk the Kids. (I would have uploaded a younger photo of her but they were too expensive!) Katherine O'Brien is a blogger who writes about having cancer as well. She posted a recent blog and I wanted to show you a quote from it.  I know I am preaching to the choir as they say, but it again delivers that most important message:
    Although Strassman freely acknowledged her Stage IV diagnosis, not a single news report used the phrases “Stage IV” or “metastatic” breast cancer. I hope I don’t sound petty–to her grieving friends and family I am sure this is a small point and one that unfortunately does nothing to alleviate their loss. But it is so important....saying that Marcia Strassman died of breast cancer after living with it for seven years somehow implies she died because she let her guard down and WHAM! breast cancer got her....this is not what happened. When someone dies from breast cancer, they died because the cancer spread beyond the breast and eventually overwhelmed the body (emphasis mine).
    Unusual for breast cancer patients, she was diagnosed at Stage IV from the beginning when it was found in her bones. As Katherine O'Brien said in her blog, if there is such a thing as a metastatic breast cancer continuum, she was on the "good" end with it only in her bones for such a long time.  Marcia Strassman was 66.
       

     ]]>     1074 0 0 0     I Don't Want to Leave a Mess http://www.sherrifillipo.com/2014/11/06/i-dont-want-to-leave-a-mess/ Thu, 06 Nov 2014 13:32:02 +0000 http://www.sherrifillipo.com/?p=1083 Decorative cosmetics for makeup.   Remember when I told you I had seen a therapist after I couldn't quit crying when a co-worker died at work? (See the post Homework if not). I had forgotten this conversation with the therapist until I went into our spare bedroom just now and it reminded me... After I had gotten the co-worker story out, I was in the midst of talking to the therapist  about all sorts of things when I mentioned to her off-handedly that I had been cleaning out the drawers in our guest bathroom. "You know what I mean. All those old lipsticks and bottles of half-used lotion." She smiled at me quizzically. "I mean, I don't want to die and leave behind a mess." I was serious and she giggled. "Do you hear yourself? You are dying of cancer and you are worried about the mess someone will be left with after you are gone?" "Yes," I laughed back. "I am very concerned what people will think who might venture into my drawers and closets. I don't want to leave a bad impression." One of my friends thinks I am a very neat and organized person. She will be the one trying to help out and she will look up and say, "She fooled us all. She's just a dirty, little packrat." Somebody else will pull out a sweater or something off a hangar and will say, " Well, getting on the show  What not to Wear should have been on her bucket list instead of going snowmobiling." I can't let that happen. So in the midst of doing a little writing, fixing dinner at night, I clean out a drawer here, throw away something there - after all, I want to leave a good impression.  ]]> 1083 0 0 0 123 0 0 124 0 0 128 0 0 Breast Cancer 101: Part 2 http://www.sherrifillipo.com/2014/11/18/breast-cancer-101-part-2/ Tue, 18 Nov 2014 14:15:15 +0000 http://www.sherrifillipo.com/?p=1100 Medical test tubes with blood in holder on white background
    1. When a breast tumor is found, additional lab studies are performed on it which will guide your physicians in the type of treatment you would benefit best from. The tumor will be tested for what's called hormone receptors. The two that you need to know are estrogen and progesterone. .  If the tumor is estrogen positive, ER+ that means that the tumor uses estrogen to fuel its cell growth. Same for progesterone. If positive, PR+ the tumor responds to this hormone in the body.  Typical response rates to hormone therapy are as follows:
    • ER+ and PR+: 75-80%
    • ER+ and PR-: 40-50%
    • ER- and PR+: 25-30%
    • ER- and PR- : 10% or less

    2.  The third important testing that is done on the tumor is determining if there is  "overexpression" meaning too much of Her2, (human epidermal growth factor receptor 2) a specific kind of protein. If positive, "Her2-positive" it means the body is  making too much protein and the tumor is using it for fuel as well. This type of cancer often grows faster, spreads to other areas more readily, and has a higher likelihood of recurring versus Her2-negative breast cancer.  25% of breast cancer patients are + for this protein.

    If a woman is negative for all three, you will often see the term "triple negative" used and unfortunately, hormonal therapies for these women don't work. Triple negative breast cancer occurs in about 10-20% of diagnosed breast cancers and is more likely to affect younger people, African Americans, and Hispanics.  Triple negative breast cancer can be more aggressive and difficult to treat.  Also, the cancer is more likely to spread and recur. If you desire more information, I used  this website as my resource and it is quite thorough : http://www.nationalbreastcancer.org/about-breast-cancer.]]>     1100 0 0 0 143 0 0     Deja Vu All Over Again http://www.sherrifillipo.com/2014/11/07/deja-vu-all-over-again/ Fri, 07 Nov 2014 13:28:19 +0000 http://www.sherrifillipo.com/?p=1102 mastectomy Today I got to the "M's" -  I have been dreading this like you wouldn't believe. Today I have to update the  "mastectomy" patient education sheet.  I'd rather do anything than this. I remember in Virginia when I was talking to my general surgeon as we discussed my surgical options. He at that point did not know I had scrubbed in on dozens of mastectomies, double mastectomies, and breast biopsies. I had augmented them, reduced them and turned them every way but inside-out.  I could tell he was trying to gingerly dance around what I already knew was getting ready to happen in a few weeks. And  I finally said, " I worked as an operating room nurse in general surgery for many years." The look on his face immediately changed and he said, "Oh.........................you know then................" Yes I am afraid I do. Well, I have postponed this inevitable patient education form as long as I can. So I will stop this blogging and start the update. It feels like deja vu all over again......................]]> 1102 0 0 0 125 0 0 126 0 1 127 0 0 Talbots Love Affair: It Had to End http://www.sherrifillipo.com/2014/11/10/talbots-love-affair-it-had-to-end/ Mon, 10 Nov 2014 13:58:41 +0000 http://www.sherrifillipo.com/?p=1124 Wooden door in red   Well, over the weekend I continued to clean up and clean out, if you know what I mean. I had to laugh at some of the emails and texts I got after that post about not leaving a mess. I don't know why it really struck a chord. My own aunt texted me and called me "weird" which tickled me  because that is about the dirtiest word I think she has ever uttered! No, not the sidekick aunt I wrote about but my older, more reserved aunt (who I still get a kick out of) and who I know was just teasing me. OK: true confession. I love Talbots, always have, always will. I love that red door just about as much as I love the red doors on Episcopal churches. For all of my professional life, I could walk in Talbots, choose clothes off the rack, put them on and they would  fit like a glove. When we lived in Connecticut, we actually lived near a Talbots outlet!!! Oh, the bargains I bought. Loved, loved, loved it. At the time and up until November 2012, I could justify a non-sale item at Talbots because I worked in an environment that required that I dress the part - especially in Connecticut. Those women dressed to take out the trash. Last spring, when I was not working, I knew it was time to 'let go'  both figuratively and literally. And for all the many ways I have been able to free and release myself with  this cancer diagnosis, giving away my professional clothes was the one thing I could not do. I made my better half use those vacuum sucking bags and I had a virtual Talbots store vacuum packed in my closet last year. All spring and summer, I would look at that tower of clothing and this weekend, when I got caught in a brief snow shower wearing a thin long sleeved shirt, I knew it was time to release those clothes from their vacuumed state, keep a few and release the rest to those who have a job and could really use some nice clothes. The one thing that finally allowed me to take the plunge is that my younger stepdaughter, the one I nicknamed "Cupcake" several years ago, is getting ready to graduate from Temple University in the spring and is headed toward a DPT degree (cupcake, did I abbreviate it correctly?) The kids have been kidding me for months as I can't get it out - a Doctorate of Physical Therapy...DPT. It just sounds like an immunization to me but anyway).....she is in need of some work clothes, interviewing clothes and we talked about me giving her some. That was my catalyst this weekend. I began by telling myself I was setting aside things for Cupcake. And then before I knew it, I was able to acknowledge that a.) I was no longer working outside the apartment, b.)I couldn't fit in most of the pants anyway, thank you very much and c.) she needed some of my blazers. I have finally done it. I have winnowed my clothes, thrown away things that might embarrass me posthumously and arranged everything by color. Yes, that helps me seeing things in their rainbow glory. So, if you came into my closet now, I would be proud....but the drawers, now that's another matter altogether.......]]> 1124 0 0 0 129 0 0 130 0 0 131 130 1 132 129 1 133 0 0 134 0 1 136 0 0 Naked Both Coming And Going http://www.sherrifillipo.com/2014/11/11/naked-both-coming-and-going/ Tue, 11 Nov 2014 14:06:43 +0000 http://www.sherrifillipo.com/?p=1135 Newborn naked sleeping on a basketA Sleeping Newborn Baby in Basket outside   Let me tell you how funny I think God can be. I really mean it. So my routine in the mornings is that I stumble to the coffee and then I sit down for a few minutes. I watch a little bit of news and then see if there are any emails. Then I make my way over to our computer (all of this is in one large room). I re-read the blog that I am going to post and then I hit the submit button. I sit back down on the couch with another cup of coffee and have my devotional. All of this can transpire from 30 minutes to three hours. Don't think I am up scurrying around like a squirrel hiding nuts. That would be my golden girls if you read that post. I am one slow woman in the morning - both pre and post cancer. Just so you know........... Yesterday after I posted the Talbots blog, I began reading my devotional. Several times a month I add something that I found called "scripture typer" which is just an electronic  way to actually memorize scripture. You choose what verses you want to commit to memory and then every month, it reminds you it's time to see if they have remained in your long term memory (oh my). Of the ones that I needed to review, today up popped this one: "Naked you came into this world and naked you shall leave. Blessed be the name of the Lord." I almost wet my pants and I know most people don't think the book of Job as being terribly funny but I thought God was saying, "Indeed young lady. You will not be needing your tower of Talbots clothing where you are going. Now, go and giveth those clothes away."]]> 1135 0 0 0 135 0 0 Elizabeth Edwards http://www.sherrifillipo.com/2014/11/12/elizabeth-edwards/ Wed, 12 Nov 2014 15:21:07 +0000 http://www.sherrifillipo.com/?p=1148 boat I have a file folder on my computer where I keep articles that have impacted me and today I began thinking about an article written by Gale Suilk entitled Re-learning the lessons of Elizabeth Edwards' death. http://blog.oup.com/2011/03/edwards-cancer/  It is coming upon the 4th year of her death. I don't know about you but it doesn't seem possible to me. If you will recall, she was diagnosed with metastatic breast cancer while her husband John Edwards was running for president. She kept it quiet for the sake of his campaign and then announced it publically afterward.  There were many in the breast cancer world that thought Edwards would bring forth more conversation, more heft, if you will to the world of Stage IV cancer. But you know what happened? In my opinion, Elizabeth Edwards' voice was drowned out by the medical world.  After Edwards' announcement, her physician at the NC Breast Center went on national television and said that many women with Stage IV breast cancer "do well for many years." But as Dr. Susan Love (who I have quoted often and who I believe has a sympathetic but realistic philosophy) wrote soon afterward, "the average survival of women with metastatic breast cancer from the time of first appearance of the metastasis is between 2 and 3 1/2 years.  It hasn't moved that much over the years."
    Gail Suilk also wrote in her article something that resonates so deeply with me: I want to have hope for my friends and family members who are dealing with aggressive and late stage cancers. I even wish for miracles. But hope for a society wrestling with cancer wrests upon the clear acknowledgement that the only true indicator of medical progress overall would be a significant reduction in the number of deaths and vast improvements in the quality of life... currently she says the only way to survive Stage IV cancer is to die from something else.
    "A glass that is half full is also a glass that is  half empty", she states. For some of you that will irritate or you might think, "you need to stay positive."  Well, I like the raw frankness of her words. I will tell you the hardest thing for me to do when I am out in public, even when I am having treatment at the Cancer Center, is to be told to look on the bright side, that there could be a miracle, to stay positive, or be told of someone who lived 25 years with something that I don't even have! I do get worn out trying to convince friends and family that it is as bad as it sounds. I admire Elizabeth Edwards for coming forward and announcing that the disease was back and that it was terminal. You do not see 'celebrity' patients, as she was known, use such frank terms.   Born: 1949  Breast cancer diagnosis: 2004  Terminal diagnosis: 2007  Died: 2010 She was 61.    ]]>     1148 0 0 0 137 0 0     Today is World Kindness Day http://www.sherrifillipo.com/2014/11/13/today-is-world-kindess-day/ Thu, 13 Nov 2014 15:26:55 +0000 http://www.sherrifillipo.com/?p=1163 sweet supper of ants At the risk of sounding schmaltzy or cheesy this morning, I was in the middles of my routine (you know, the coffee, the news, the waking up) when I scanned US Today and the title of an article caught my eye, "Kid drops out of college to devote life to kindness." http://www.usatoday.com/story/news/nation-now/2014/11/12/inspiration-nation-ark-project-now/18939687/  A young man being  interviewed said he had finished his exams and was watching a movie and at the end of the film, wise Morgan Freeman asks, Do you want to know how to change the world?  One act of random kindness at a time." Sometimes I feel it is an overused phrase but it doesn't mean that I believe the concept is overused.  So, today is world kindness day. For those who wish they could do something, maybe everyday instead of one day a year, there is a website that lists dozens of ways both large and small that depending upon your time, skill level and resources you will find something that might spark you into action. http://www.randomactsofkindness.org/kindness-ideas. You can filter by cost, by category (environment, animals etc.) I confess that sometimes I feel quite on the outside of life. Most of the time as I have written, I am ok with it. Sometimes, I am not. Like last night at  a work function, as I looked around at my former colleagues, most of whom I also consider friends, I got so sentimental as I haven't seen them all together in long, long time. You know how these functions go. Part of the time the talk is social and part of the time it is work. I could keep up with the social but again, the work part, I only knew bits and pieces of the topics and by the time I was saying good-bye and good night, I was a tearful woman. After a good cry in the shower when I got home and a little unwinding I went to bed and slept like that proverbial baby. So maybe what I am really getting to is that seeing that article reminded me that  there are dozens of ways I can choose to participate in the world and it is up to me to be creative and find the ways. I just need to wipe my nose and get on with it.]]> 1163 0 0 0 138 0 0 Betty Ford http://www.sherrifillipo.com/2014/11/19/betty-ford/ Wed, 19 Nov 2014 12:57:00 +0000 http://www.sherrifillipo.com/?p=1171 photo: womenwhochangedamerica.com photo: womenwhochangedamerica.com[/caption] Recently, I was reading in RealSimple magazine and noted that when Betty Ford was diagnosed with breast cancer in 1974, back in the days when you didn't say the phrase "breast cancer" out loud, she received 60,000 letters from people across the US. In a Newsweek magazine article after her diagnosis in 1974, she was credited with tearing down the barriers of this hush-hush diagnosis and bringing it out into the open. She allowed the media into her hospital room (she's better than me - I would have kept them waaay out) but I get the sense she was just that kind of trailblazer. And her life continued to exemplify that. If you will recall, she acknowledged an addiction to pills and alcohol and head held high several years later, entered a rehabilitation facility to deal with her addiction. Clearly she did not end up having metastatic disease but I think we can all be appreciative of her ability to push this nation along and getting the disease out in the forefront. I am willing to give her the credit (but not Campbell's soup or the NFL) for  bringing breast cancer awareness to the country.   Born: 1918  Primary Diagnosis: 1974  Died: 2011 She was 93.]]> 1171 0 0 0 144 0 0 145 144 0 Arbitrary Weekend Updates http://www.sherrifillipo.com/2014/11/15/arbitrary-weekend-updates/ Sat, 15 Nov 2014 13:00:48 +0000 http://www.sherrifillipo.com/?p=1177 Close up of a baby Tawny Owl (Strix aluco)I should probably make this a weekly thing but at least for today I will update you on things that really don't mean a hoot as they say down south:
    • My aunt called to inform me that she called me a "mess" not "weird"  for writing about cleaning out my closets. That term is also very southern as I found out at Yale one day when I was talking about my son. I noticed a discomfort in the room afterward and had to backtrack until I realized that culturally they had no idea that I meant it as an endearment. The room was much kinder once we got that straight. So, yes, my aunt was being endearing and not judgmental!
    • To date, I have not lost my mind and my TSA known traveler number did arrive. Now, if I can only keep my mind intact...
    • I got a text from a friend and former colleague who thought my use of the varying phrase, "he who does not want to be mentioned" was so clever and he began to wax on about Harry Potter. Well, having never read Harry Potter, I thought he had gone off the deep end until we realized I had used that phrase innocently. He then said he was finally glad to be able to teach me something about popular culture since he had never heard of Welcome Back Kotter. OUCH!
    • A friend from that cocktail party this week leaned over and asked me if I had any clothes left in my closet. I think she was serious! Yes, I have more than I need and still need to cull some out.
    • My reserved aunt was fretting and finally asked me if I had least kept one Talbots outfit... for .....for.....for... I said, "My funeral?"  Yes, that's what she meant but couldn't get it out. I burst out laughing. The answer is, no.
    • My sidekick aunt thought I had made up the word "schmaltzy" in the blog about world kindness day. But she had either googled it or asked someone before she emailed me! And said, "That's a real word!" (Bless her heart. Not her fault. She has never lived nor walked amongst the northerners!)
    ]]>     1177 0 0 0 142 0 0     Healthcare Tug-O-War http://www.sherrifillipo.com/2014/11/20/healthcare-tug-o-war/ Thu, 20 Nov 2014 15:17:26 +0000 http://www.sherrifillipo.com/?p=1197 GI issues to put it in a nice southern term. That's what led my oncologist to order scans, which showed spread to the liver and the rest is history.....in the past two years, each of those little thorns has been bothering me but a lot like that carnival game whack-a-mole as soon as one would rear its ugly head, the other one would duck....until about a month ago where they all decided to take up residence in my body at the same time. Without ceasing. Two dogs playing on beach

    That's when my oncologist wanted me to get an upper endoscopy. No, thank you I said politely. And not to be from the south, she was very southern in her backdoor approach to twisting my arm but I stood firm. I have seen those done and I do not care to have one done on me since I know what I think is causing the problem. So she and I did a little healthcare bargaining. If I had a PET scan done and it showed nothing, would I then consider the upper  endo? Yes, I agreed. Well, you know what the scan showed, two lesions in my liver starting to act up. You know that gross commercial about mucus - that green gunky animal looking thing? That's what I think those lesions look like wreaking havoc in my liver but I digress.

    So, today it was my turn to see the nurse practitioner. An incredibly bright, thorough nurse. I like her very much but when she asked me how I was doing, I told her that the three amigos were back and I felt the next PET scan would show increased numbers. (That was the savvy nurse talking.) She then said, "But if you are nauseous and not eating, that could lead to GI troubles which could be making you nauseous....." She was telling me I was putting myself in a vicious cycle and that she wanted me to have the upper endo to see if something else was causing my symptoms. I turned to the one who will not be named and he stayed silent. Then I turned into the weary patient and started crying, "No, I really think it is my liver. I am so tired of this.....two years....every three weeks..." She relented. "OK, but if the next PET scan shows no progress, can we come back to the table with the endo?" I told her yes and then confessed I had stopped taking one of my oral meds when I ran out and as soon as I ran out, my headaches stopped with it. So then she says, "OK. When the PET scan comes back with no progression, will you have the endo and start back on the med?" (Here comes the petulant child.) "Yes" I said, "But I am telling you like I have told Dr. xxxx, the first hot flash I get (a side effect) I am either throwing myself out the window, or the drugs, or both." "Fair enough," she said. She was so poised and so wise and I sat there like a triumphant child after a tantrum. Oh my.]]>     1197 0 0 0 147 0 0 148 0 0 149 0 0 150 147 1     BRCA1 & BRCA2: Why Angelina Jolie Makes Me Crazy http://www.sherrifillipo.com/2014/11/21/brca1-brca2-why-angelina-jolie-makes-me-crazy/ Fri, 21 Nov 2014 15:20:51 +0000 http://www.sherrifillipo.com/?p=1207 Blue DNA helix background OK. Right off the bat. Angelina Jolie makes me crazy for all kinds of reasons, the least of which is the way she thought she was helping the masses and her family by removing her breasts because of a "faulty gene" as she calls it. I would like to talk a bit about this faulty gene. You can consider this Breast Cancer: Part 3 if you want to.   Do you remember in 2013 when she had prophylactic double mastectomies after she tested positive for the BRCA gene? She also says that she did this because her mother died young (56) from cancer. http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0 BRCA1 and BRCA2 are human genes that produce tumor suppressing proteins which helps repair cells to keep a 'balance' if you will in the body. Remember that cancer are cells that have mutated or changed in a bad way and then they replicate out of control and overwhelm an organ, organs or the entire body. If you are tested and are positive for one of these genes, your chances of breast cancer are increased but it doesn't mean that you will automatically get breast cancer.    There are a few things that need clarifying though that her op ed piece and others in the news didn't really mention:
    1. As my general surgeon and I discussed in 2010, I wasn't very interested in being tested. He agreed with me and made an interesting remark, "How many BRCAs are there? Does anyone know? And what if you test negative for 1 and 2? Maybe you are positive for BRCA3 which they haven't even discovered yet. What if there are 50 BRCAs? We just don't know."
    2. Insurance may or may not pay. Obviously for Jolie, money wasn't an issue. But I would imagine that $3000 out of pocket as she was quoted as saying would be pretty substantial for many people.
    3. Even if you are tested and it comes back positive, the testing cannot tell you if you will ever get cancer nor when. Sometimes the test comes back ambiguous. Do you feel better or worse after the tests tells you nothing?
    4. If it comes back negative, a woman may breathe a sigh of relief but that does not mean that she won't get cancer. How many out there believe if it's negative, I'm home free? My guess? A lot!
    5. If you test positive, then what do you do? For many, they start getting more mammograms (see previous posts on that topic) or they start wondering if they should do what Angelina Jolie did and have them removed. I like what Dr. Susan Love said about it. She said, "when you have to cut off normal body parts to prevent a disease, that’s really pretty barbaric when you think about it.” Meaning we are so far off from understanding breast cancer and when  sometimes the best thing is to 'amputate'  it means we are just treading water, not swimming toward shore with an answer to this disease.
    6. If you do not have one of the risk factors that would make you think about having this test, going ahead and having it done because Angelina did, well guess what? It has been shown to give false-positive test results, meaning it is saying you are at risk but you are really not!
    7. According to a follow-up article in the health section after Jolie's article, http://www.nytimes.com/2013/05/15/health/angelina-jolies-disclosure-highlights-a-breast-cancer-dilemma.html?ref=opinionMutations  BRCA1 and BRCA2 are estimated to cause only 5 percent to 10 percent of breast cancers in white women. No one knows how common or uncommon it is in other races.
    8. Surgery, any surgery comes with its own risks. Anesthesia, the safest thing that is done in healthcare, still has its risks. No one should have any surgery done without a thorough knowledge of the risks, benefits and alternatives to the procedure being discussed.
    9. Jolie was able to have a nipple sparing procedure. I don't think most women understand when you have cancer and they take your breasts, they do not leave your nipples behind as a souvenir. They are removed as well.
    10. In her article, I think she minimized the postoperative phase stating that though she looked like someone from a science fiction movie with her drains, within a few days she was back to living life as normal. Do you know why? Because she didn't have cancer. It took me a lot longer and my future was more uncertain than hers. I didn't jump back into life. I jumped into chemo.
    I believe if a woman is genetically tested and finds that she is positive for these genes and she decides to have prophylactic mastectomies, it is within her right to do so. But at the same time I am so saddened and so angered by the women who have chosen this path somehow trying to emulate Angelina Jolie because she is  beautiful and oh so brave.  I have read articles where physicians have been repeatedly unsuccessful talking women out of this 'fad' (my term) thanks to this actress and it breaks my heart. No one should have this done to them, to their bodies, unless they really have no other option. Trust me. A resource I used and for more information: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA]]>     1207 0 0 0 151 0 0 152 0 1 153 0 0 154 0 0 155 0 0 388 0 0 389 http://gravatar.com/sherrifillipo 388 0     A NC Angel http://www.sherrifillipo.com/2014/11/25/a-nc-angel/ Tue, 25 Nov 2014 12:00:54 +0000 http://www.sherrifillipo.com/?p=1227 Angel Wings Hebrews 13:2: Do not neglect to show hospitality to strangers, for by doing so, some have entertained angels without knowing it.  I remember loving this verse as a  little girl as I would often wonder when I would go out shopping or when we would travel if this person or that person, was actually an angel in disguise. It always intrigued me - even today! Well, I want to tell you about a real-life angel. She is someone I worked with back in North Carolina in the OR. Though we were colleagues and friendly with one another, we weren't buddies. Why, I don't know, looking back. But I remember her being exceedingly smart, very fit and I do believe she served in the Gulf war which seems so long ago now...but let me tell you about this angel in the flesh. I responded to a linkedin post back in the summer (prior to starting my blog) to a man who wrote a post about bucket lists. I commented on the post some of the things that I have blogged about here. And then the most amazing thing happened. This former colleague emailed me and said, "I think everyone should see Billy Joel once in their lifetime. I have two tickets to see him at Madison Square Garden and I would like to send them to you." I was dumbfounded. Not because she is not known for being kind - a great nurse but wholly cow! What an act of kindness! After a couple of emails, I thanked her profusely so guess where we are headed today? We are driving to Manhattan today. We will see Billy Joel tonight and on Wednesday, we will shop and marvel at the Christmas lights and shop windows (an annual favorite thing for me to do). Then we will drive Thanksgiving Day further down to Philly to have dinner with my beloved's family. Thank you my NC angel for giving me such a wonderful gift.]]> 1227 0 0 0 157 0 0 158 0 0 Words to Live By http://www.sherrifillipo.com/2014/12/02/words-to-live-by/ Tue, 02 Dec 2014 11:56:45 +0000 http://www.sherrifillipo.com/?p=1239 vintage toned postcard of Eiffel tower in Paris Today is the day that I travel again 45 miles east to the hospital to have a couple of things done in preparation for chemo on Thursday. One of the tests that is done every three months is an echocardiogram which is a fancy way of saying they are taking a 3-D look at my heart. Why? Well, every drug has side effects. And some side effects are simply annoying, like for instance the drug that I have been on for two years has a side effect of a constant runny nose - I kid you not. 24 hours a day, seven days a week. But unless you drive yourself crazy with that one, it won't kill you. And since I need to maintain my TSA mental sanity to scoot through the lines at the airports, I stuff my sleeves with Kleenex, wipe my nose  and keep moving on. But there are also potential lethal side effects that come with medications and that same drug that gives me the runny nose, trastuzumab (Herceptin), also has heart failure as a side effect - like breast cancer patients don't have enough to worry about. Though uncommon, some women have had to stop this drug not because it has quit working (like it has on me) but because it was too toxic on their hearts. Seems cruel to me but that is science and the way things work. If after reading my ramblings, you learn nothing else, the wisest takeaway is that medicine, especially oncology, is just as much art as it is science, meaning there are more questions about this disease and these drugs than there are answers. And after the echocardiogram, it will be time for the follow-up PET scan. You remember the one? The no carbohydrate, no caffeine, no alcohol diet I am on until lunchtime? I am afraid if you call me this morning, I might sound like a bear. All in the name of getting an accurate scan I suppose. So, Thursday I will return to the hospital and meet with my oncologist to review these scans and to initiate round one of this new chemo. I was asked over Thanksgiving how long I would be on this drug and it brought to mind that many others may not understand this process. If you think of cancer being water and the chemo being the dam that holds it back, if you will, that chemo is in place until cracks form in the dam or until the dam breaks altogether. Then that chemo is stopped and another is tried. That drug becomes the dam and too it is in place until it no longer works and cracks form again. With each new chemo, theoretically, the length of time it can stave off the cancer lessens until finally there are no more chemo drugs to use on your particular disease and the cancer overwhelms the body. The drug I will start on Thursday has only been FDA approved and on the market since February 2013. Which is a roundabout way of saying, we're nearing the end of the line of options. When I write this I am aware I am not including clinical trials which I think will be a good topic for later this week. But today I will leave with this. I woke up thinking about Paris' motto which I have loved since the day I heard it. In Latin, Fluctuat nec mergitur  which translated means:

    Tossed by the waves, she does not sink. 

     ]]>     1239 0 0 0 161 0 0 162 0 0 163 0 0     Thanksgiving Angel http://www.sherrifillipo.com/2014/12/01/thanksgiving-angel/ Mon, 01 Dec 2014 15:10:22 +0000 http://www.sherrifillipo.com/?p=1240 police I had a wonderful Thanksgiving weekend. I hope you did as well. The Billy Joel concert was absolutely fantastic! Midway through, Sting came out and sang and then later for you baby boomers, John Mellencamp came out and sang as well. All in all, a great evening. Our Wednesday was to have been spent getting some of our shopping out of the way but the weather was so horrific (rain>howling wind, turning umbrellas inside-out, sleet>snow> back to rain) we finally ducked in for cover at a Hard Rock Café along with the rest of Manhattan. Beloved and I began to wonder how inexpensively we could see a Broadway matinee. So while we had lunch, I scoured the internet and lo and behold, we found affordable Les Mes tickets and spent the rest of the afternoon at the theater out of the weather. The true definition of serendipitous! Thanksgiving Day, we found ourselves literally stuck in Manhattan due to the parade. When I say stuck, I mean literally stuck, with all exits out of the city near where we had parked the car blocked off until 2:00pm that afternoon. When a NYC policeman told us this, I stood there frozen in disbelief. Suddenly I felt claustrophobic. We were going to miss dinner in Philly? Then an 'angel' (see last post) walked up with his wife to retrieve his car from the same garage and when I told him about us all being stuck, he just looked at me and didn't say a word. He paid for his car, the car was brought up from the bowels of the garage and the next thing I knew he told us to follow them. He got in his car, rummaged around for something and then he draped his retired police badge over the rearview mirror. He then turned left (remember that the streets are closed off and it has become a pedestrian walkway) on a one way street and waited for us to pull in behind him. At each intersection cops either lifted barricades or moved their vehicles to let us both by. He waited each time for us to get through the intersections and then before you knew it we were on the very westside of Manhattan He then turned left, we turned right and were on our way to Philly. Angels come in all shapes and sizes!]]> 1240 0 0 0 159 0 0 160 0 0 Words to Live By: Follow Up http://www.sherrifillipo.com/2014/12/03/words-to-live-by-follow-up/ Wed, 03 Dec 2014 14:36:58 +0000 http://www.sherrifillipo.com/?p=1249 grunge resembling lightning and cloud stormy weather I know  I have said it before, but sometimes when I am able to "see" God communicating with me, it tickles me to death. After writing about Paris and the motto that I love, "tossed by waves, she does not sink," yesterday I sat down and read my devotional. This is a devotional that I would recommend to you as it was recommended to me by one of my "golden girls" (see prior blog about these girls). The book is entitled, Jesus Calling: Enjoying Peace in His Presence. The author is Sarah Young. It is written in daily format, 365 devotions. I have it on my kindle and have read it two years now. What I have found interesting for me is that I highlight things that mean something to me on that day. In 2013 I used a yellow highlighter. This year, 2014,  I am using blue. I like to go back and see where I was mentally/spiritually/physically by seeing what caught my eye on that same day a year ago. So today, I read my passage after writing about being tossed by waves but not sinking and look what part of the devotional said: "You need the certainty of My loving Presence in order to weather the storms of life....the ultimate protection against sinking during life's storms is devoting time to develop your friendship with Me." Isn't that wild? When I see these links in my life, I feel like giving God a fist bump. Yes, I see you up there! I get it! So cool.]]> 1249 0 0 0 170 0 0 All That Glitters Is Not Gold! http://www.sherrifillipo.com/2014/12/04/all-that-glitters-is-not-gold/ Thu, 04 Dec 2014 13:43:29 +0000 http://www.sherrifillipo.com/?p=1278 Bright gold glitter My PET scan results came back and the good news is that the cancer has not spread to the lungs or the bone. The bad news is that the two liver lesions have grown and the "uptake" as it is called has doubled. OK. What is uptake? Remember the pre-procedure PET diet of no carbs/alcohol etc. prior to the scan? This is to prepare the body for the injection of the radioactive material that swims around inside your body attaching itself to areas of  what is called "high levels of metabolic activity" where cancer cells are known to hang out - replicating out of control.  In order for the test to be accurate, you want the body to be in a quiet metabolic state, not churning around and trying to digest loads of carbs. So, they ask you to avoid them for a day and then eat nothing after midnight.  Think  carbs = glucose = fuel = metabolic activity.  If I had continued to eat carbs and had washed it all down with a glass of wine before coming in for the PET test, the results could have been skewed.  So, uptake means how much of the radioactive material that particular area is absorbing. 0-2 means no cancer, the higher the number the more assuredly it is cancer with the maximum on the PET scale of 15. [caption id="attachment_1284" align="aligncenter" width="210"]photo from www.aboutcancer.com photo from www.aboutcancer.com[/caption] If you read radiology reports (which you would be crazy to do unless you had to)  you will see the word "brightness" often used in the reports - meaning the higher the number, the brighter the spot, the more uptake of glucose those cells are demanding.  Well, my two little buggers went from 6 and 8 last time (which was bad enough) jumping to 13. How dare they! So, last night when I was talking to my mother about the results, I found myself explaining it by saying, "they are bigger and brighter .... but that's not a good thing!" Then we laughed at the ludicrousness of it all.  ]]> 1278 0 0 0 164 0 0 165 0 0 166 0 0 169 164 1 Volume II http://www.sherrifillipo.com/2014/12/05/volume-ii/ Fri, 05 Dec 2014 15:13:10 +0000 http://www.sherrifillipo.com/?p=1292 Medical recordIt is 4:45pm on Thursday and I just got home from the hospital. What a day. Future infusions won't take this long but today starting a new chemo, physicians are always cautious. Typical infusion days go like this: I stop at the reception desk and a woman registers me; she  tells me how great I look (I think she is required to say that to one and all and she does a great job of it), I get banded; she hands me my chart  and then sends me to the infusion area for lab work. With Sabrina gone (see past blog - she left the building and she left me but that's another story) I now see one of two nurses. (There are many nurses back there but Sabrina and these two are the ones I have had most contact with.)  Instead of rolling dice to see who got me (or maybe who didn't have to get me) after Sabrina resigned,  they decided to split it down the middle; I alternate between the two. How funny is that? So, they access my port, they say: "1-2-3-I'm sorry" every time as they poke me. It seems to hurt them far more than me.  And they draw my labs. And then they send me back out to the front to wait to see the oncologist. Later my name is yelled out and I follow a nurse tech to the back where I am immediately weighed. I do not like this and so I take my shoes off every time as if that really makes a hill of beans difference and I leave powder marks on the scales and a trail up the hallway to my room. Every three weeks like clockwork. After vitals, today I was asked if I had been to to west Africa recently, which I told the nurse tech indeed I had and she about fainted on the spot!  These questions are  now required to be asked of all patients to assess for exposure to Ebola....earlier this week when I had my PET scan the receptionist asked me if I had been in west Africa and when I told him I had (liar) he kept on with his list of questions, never looking up, never really processing what I had just told him.  But again, I digress. After beloved and I picked the nurse tech off the floor and told her I had lied and that no, I had not been out of Steuben county in the past few days, she recomposed herself and continued with my vitals. She left and my cute, adorable oncologist scooted in, ALWAYS, cleansing her hands before she sits down and we go over the lab work that has come back, she does a quick assessment of me and then we go back to the infusion area for treatment. Today? After I was banded and handed my  chart, I looked down at its cover and do you know what I read? Volume II  Do you know what that means to a healthcare provider? That this old gray mare has been in this place so many times, we have had to cull her chart and start over. When I told my oncologist what I had noticed, she burst out laughing and said, "Remember when there was no computer and we had to carry around volumes I, II, III etc? " Yes, I told her I remembered those days. She then walked me back and I had my infusion. Today it took 90 minutes and then I had to wait 90 minutes more to make sure I didn't grow two heads or show signs of Ebola or something. And then I was let go. But not before the "lung oncologist" as I call him walked by and asked me, "Has anyone given you your sugar wafers yet?" Which is a running gag as I do love them and they get gone so fast that once he went down to the 7-11 looking for some to give me and now keeps them hidden in a cabinet at the nurses' station. When I told him I had not gotten them today,  I can't tell you what he said but it was hilarious. Well, ok I will tell you sort of. He yelled out, "Well, that's just equine poop!"  He stormed out and brought them back to me. He is not my doctor. I have never seen him except in the halls.   He will tell you he wants to have nothing to do with breast cancer. Hey, neither do I but here I sit getting chemo, eating sugar wafers. Every three weeks like clockwork.  ]]> 1292 0 0 0 167 0 0 168 0 0 171 168 0 172 0 0 Not So Sunny Florida http://www.sherrifillipo.com/2014/12/08/not-so-sunny-florida/ Mon, 08 Dec 2014 18:57:38 +0000 http://www.sherrifillipo.com/?p=1305  

    We arrived on time with no delays Friday night for the annual patient safety conference that we have been attending for years. The IHI National Forum on Quality Improvement in Health Care as it is officially known now.Though it doesn't technically start until this evening, we have always come a couple of days early as this is one of Beloved's happiest places on earth, OBX not withstanding. Saturday was very warm and sunny and I laid around by the pool in a post-chemo haze. We did go to Epcott and I told Beloved I could no longer walk the park. Next thing I knew I was being pushed in my own chariot.  OK wheelchair but it doesn't sound nearly as Disneyesque..... Sunday the weather was cloudy and I laid around in bed. Today? Pouring buckets and they had the nerve to put us in a room that faces the gigantic pool and new HUGE waterslide that I would be pushing young children aside to get to if it wasn't so drippy horribly wet out there.

    I am having bouts of insomnia and am up watching really weird stuff on TV. I have a horrible fascination with prison life and am glued to interviews where inmates talk about prison and how they get through their days. And the food. How do they stand it? Then I watch American Greed and wonder how so many people can be duped in various ways for sooo long. I am not sure what it says about me by divulging these midnight activities. I guess I am still back at the starting gate wondering why there are eight ESPN channels and no BRAVO every hotel I go to...

    ]]>     1305 0 0 0 173 0 0     Clinical Trials: Part I http://www.sherrifillipo.com/2014/12/11/clinical-trials-part-i/ Thu, 11 Dec 2014 13:56:46 +0000 http://www.sherrifillipo.com/?p=1309 Empty laboratory glassware with reflection isolated on whiteWe arrived back in snowy NY last night. I must admit I was happy to come home to cats and Christmas trees. I was frustrated not having consistent internet access where we were staying in Florida and then realized that I must have some strange addiction to this blogging as I don't have anything earth shattering to say but it keeps me out of trouble I suppose.

    I wanted to talk about clinical trials as I get that question by many friends and family wondering if I should or would seek out such an option when this drug ceases to work and for me, the answer will be no. People vary widely on this subject and all I can say is that for me, I just don't want to be put through anymore. I  am at peace. But I do have work friends and family friends who said they would seek out trials at all cost if and when it ever came to such. And I respect that. I did find helpful information on the Johns Hopkins website  http://pathology.jhu.edu/breast/trials.php  that gave the pros and cons of such a decision. This is quoted verbatim.  I thought I would share it with you in case you have never really thought about this subject. Pros:
    • Quality of Care. Clinical trials offer high-quality cancer care and necessitate very close monitoring. If you are in a study and do not receive the new treatment being tested (that is, if you are in the "standard therapy group"), you will receive the best standard treatment. This may be as good as, or better than, the new approach.
    • Early access. If a new treatment approach is proven to work and you are taking it, you may be among the first to benefit.
    • Proactive. By looking at the pros and cons of clinical trials and your other treatment choices, you are taking an active role in a decision that affects your life.
    • Altruism. You have the chance to help others and improve cancer treatment for patients in the future.
    Cons:
    • Treatment efficacy is not known. New treatments under study are not always better than, or even as good as, standard care. They may have side effects that doctors do not expect or that are worse than those of standard treatment.
    • Not everyone benefits. Even if a new treatment has benefits, it may not work for you. Even standard treatments, proven effective for many people, do not help everyone.
    • Controls receive only standard therapy. If you receive standard treatment instead of the new treatment being tested, it may not be as effective as the new approach.
    • Costs depend upon type of insurance and state. Health insurance and managed care providers do not always cover all patient care costs in a study. What they cover varies by plan and by study. To find out in advance what costs are likely to be paid in your case, talk to a doctor, nurse or social worker from the study. Congress is currently considering proposals to eliminate this barrier and require insurance coverage for cancer clinical trials.
       ]]>     1309 0 0 0 174 0 0 175 0 0 181 https://plus.google.com/117921611596419106652 0 0     Owl Infestation http://www.sherrifillipo.com/2014/12/12/owl-infestation/ Fri, 12 Dec 2014 14:47:18 +0000 http://www.sherrifillipo.com/?p=1330 owls3 Aren't these the cutest things you have ever seen?  This is the one thing I remember my mom baking as a child that my sister and I would wait for all year. She would bake them at Halloween and we loved them. With money not so plentiful growing up, we would eat from the outside in going in a circle, saving that luscious cashew for last. I have kidded my mother for years about them and they have popped up at the oddest times and places. Like in the pre-op holding area of the OR when I was being walked back for surgery in 2010. Mom and Dad had driven up from NC (we were in Virginia at the time, remember) and as we were walking back, my mother yelled out, "Wait, just one minute. I have to show you something" and out popped her tupperware and two dozen owl eyes stared back at me. My nurse who was trying to get me back for surgery looked at me quizzically and I told her that was my mother's way showing love. "Mmmmmmm," she responded, "to a woman who has had nothing to eat since midnight." And we both laughed. Last night we stumbled into a dark apartment and bumped into a box from an address I didn't know - "Triple Creek Farms" - I looked at Beloved and he shrugged. I didn't think I was on anyone's hit list so I took a chance and opened the box. Out sprang two dozen owls. I had an owl infestation on my hands! Beloved looked at me like, "What do owls have to do with Christmas and who sent them?" I  laughed as they were packaged two-by-two as if they were boarding an ark headed for the cold northern tundra. Each pair wrapped in a different color of tissue paper. My mother. She is one funny woman. She now waits to call me in the morning after I have posted my blog. She says it's her way of knowing that I am up. This morning she called and I told her I had a problem (I am devilish that way as someone told me when I wrote about scaring that nurse tech about ebola - but I can't help myself). She said, "OK. What's wrong?" I told her I had an owl infestation and she hesitated for just a second before choking on her coffee she was laughing so hard. She told me she had forgotten that she sent them (huh?) that she had made the dough up at the appropriate time, Halloween, but had been too busy with her pumpkin making (another story for another day) so she froze the dough and had just gotten around to making them last week. I must confess. I still eat them in a circle, saving that cashew for last. Some traditions are hard to break.  ]]> 1330 0 0 0 176 0 0 177 176 0 178 http://www.JoannSamelko.com 0 0 179 0 0 180 0 0 182 0 0 183 0 0 Owl Fan Club and My New Girl Yuki http://www.sherrifillipo.com/2014/12/15/owl-fan-club-and-my-new-girl-yuki/ Mon, 15 Dec 2014 16:13:17 +0000 http://www.sherrifillipo.com/?p=1340 owls on a plate Wow! I had no idea those owls had such a fan club following!   My sidekick aunt was the first one to text me to say, "ohhhhhhhhhhhhhh I had forgotten about those owl cookies!" Then later she texted me from work: I want an owl cookie. I could just see her at her desk with a little dabble of drool at the corner of her mouth! She then told me to eat one for her. I didn't have the heart to tell her I was munching on one as I read her message...then a family friend emailed me telling me she had enjoyed the  post and that she had several of my mother's recipes but not that one! Then several of you told me you thought it was a sweet mother story....later Friday night as I was winding down, a former work friend, whom I will be having lunch with at the OBX next week emailed and queried if any owls would be traveling south with me! Ten minutes later my stepdaughter texted me asking if Mom would be willing to show her how to bake them while we are all at the OBX for Xmas. I told her definitely. By the way since you asked, they are peanut butter cookies in the middle with a chocolate rim around them. I know. It makes them even more adorable. By the way, guess what I ordered last week? Well let me back up. We have two German cars that we have named Helga and Heidi based on their size. Well, last week we added a sister to the family. A real go getter with all wheel drive (just in time my Corning friends told me laughing, since this is our third winter here and we have been sliding through each winter so far - we came back from Orlando with six inches on the ground)  and since she is Japanese, I had to look for a suitable name....well I named her Yuki which is Japanese for snow. (I think that I am oh so clever) but now she needs an appropriate license plate don't you think? OBXMAS it is. When I explained it to the DMV lady, she told me she liked it very much. So there!]]> 1340 0 0 0 Again, All That Glitters Is Not Gold http://www.sherrifillipo.com/2014/12/16/again-all-that-glitters-is-not-gold/ Tue, 16 Dec 2014 14:51:48 +0000 http://www.sherrifillipo.com/?p=1351 Red blood cells isolated on white
    • 42,000 women ended up having this treatment done to the tune of $3.4 billion dollars
    • 9000 women died from the treatment
    When a randomized clinical trial was finally conducted in 1999, it found that this regimen was no better than conventional treatment.  ]]>     1351 0 0 0     Research and Pharmaceutical Companies http://www.sherrifillipo.com/2014/12/17/research-and-pharmaceutical-companies/ Wed, 17 Dec 2014 15:16:10 +0000 http://www.sherrifillipo.com/?p=1360
  • The pharmaceutical industry underwrites about 75% of clinical research
  • Many of the scientists and clinicians responsible for the trial receive compensation from the pharmaceutical firm in the form of salary or consulting fees
    • Do you remember the drug Vioxx (rofecoxib)? It was approved by the FDA on May 20, 1999. Worldwide, over 80 million people were prescribed this drug. It was used as a non-steroidal anti-inflammatory drug. In January 1999  Merck launched the "Vioxx GI Outcomes Research" (VIGOR) study comparing  rofecoxib and naproxen (one of its competitors). One of the things they found was a  4-fold increased risk of acute myocardial infarction in rofecoxib patients when compared with naproxen patients. But they hid this information from the public and people began to die. So, what did the Merck corporation do? Immediately recall the medication? Not hardly...

    Colored pills, tablets and capsules

    In 2001, Merck’s sales force developed a flashcard game called “Dodge Ball Vioxx” to help train Merck sales representatives on how to respond to certain questions or concerns that doctors might have about Vioxx. The game included a 12-page list of obstacles including some questions concerning the association between Vioxx and heart problems. The flashcards gave statements that a physician or patient might state like, "I have heard that Vioxx causes heart problems." And the flashcard would explain to the sales rep what the best answer to that question would be  - all the while dodging  the real issues.  On September 30, 2004, Merck voluntarily withdrew rofecoxib from the market.

    The FDA estimates that  60,000 died from taking Vioxx before it was removed from the market.

     ]]>     1360 0 0 0 186 0 0 187 0 1     Musings Of A Bored Woman http://www.sherrifillipo.com/2014/12/18/musings-of-a-bored-woman/ Thu, 18 Dec 2014 15:55:48 +0000 http://www.sherrifillipo.com/?p=1372 Daydreaming If you are alone during the day like I am and the cats are tired of chatting with you, your mind wanders. At least mine does. This is what I have been ruminating about this week:
    • How can Angelina Jolie know everything about the BRCA gene, lop off her breasts but somehow get chicken pox?
    • How can NBC let Nancy Snyderman (Dr. Nancy as she is affectionately known - gag me) back on the air after the internet backlash she received for ignoring her quarantine when she returned from West Africa?
    • If you mistakenly pour tequila into your tonic water, thinking it is gin, do not throw it out. Actually, it is rather quite tasty. You will have to trust me on this one.
    • Don't you think you can tell a lot about a person based on how they decorate the back of their Christmas tree??
    • Why would anyone make a movie about North Korea in the first place?
    • Why when a clothes dryer lint compartment caught on fire years ago at my hospital, did they make my friend the Infection Control Director write a policy about cleaning out the lint on a regular basis? (I told you, I have been bored and my mind wanders.)
    • Why won't people get as upset about handwashing as they are about getting Ebola?
    • Why won't people get as upset about the flu shot as they are about getting Ebola?
    • Why when you go to a party or reception do they serve so many raw vegetables? Do you notice no matter how good the dip, there will be several hundred pounds of vegetables laying around on limp lettuce when everyone starts going home? Am I the only person who hates the word "veggie?" Just wondering...
    • If you think these ramblings are those of a mad woman, please keep it to yourself. Only because I made that promise to the TSA lady and I have travel plans in the upcoming months.
    ]]>     1372 0 0 0 188 0 0 189 0 1 190 0 0 191 190 1     A Little More On Research and Medical Literature http://www.sherrifillipo.com/2014/12/19/a-little-more-on-research-and-medical-literature/ Fri, 19 Dec 2014 17:03:42 +0000 http://www.sherrifillipo.com/?p=1388 booksI had many texts, emails and conversations about the clinical trial blog along with the Vioxx blog that made many of you nervous. That was not my intent but it was my intent to illuminate some of the things going on around you that impact the decisions your caregivers make, the drugs that you take, the ads that you see on the evening news. I am aware that these blogs are written in sort of a "sound bite" way  - quick shocking facts that don't allow for dialogue which we could have if we were sitting down or if we were in a classroom situation. But I thought I would write one more blog on things going on in healthcare, knowing that I am only scratching the surface with this topic.  So, here we go again. I have always found these statistics fascinating:
    • There are over 20,000 bio-medical journals in circulation
    • 150,000 articles are published each month in these journals; that’s 5,000 articles per day!
    • Many of the research articles are not peer-reviewed
    • Many articles are sponsored by the pharmaceutical companies or device manufacturers
    The question is, if you were an internist, how could you possibly keep up a practice and live a life outside the office/hospital and even begin to keep up with the research in your chosen field (not to mention any subspecialty you have the you would be interested in)? But just because something is published, it doesn't mean it's good. Just like you pick and choose your food at the market, so should healthcare providers be picky in choosing what they believe when they read something. In an article several years ago in the Journal of Association of the American Medical Association (JAMA), an author took 49 highly cited studies (meaning they were referenced and quoted many times in many other scholarly publications). Of those 49, in later research, 32% of those articles had refuted findings. 16% contraindicated the effects of whatever was found in those studies and another 16% overestimated the effects of the studies. When you hear the phrase on TV or in a magazine at the doctor's office  "randomized clinical trials" does that mean anything to you? In the medical world, it is the gold standard by which research is conducted. It means that participants are randomly chosen to be in either the control group or the experimental group. The only expected difference between these two groups is the 'thing' that you are researching.  Then why isn't every study conducted this way? Because it is expensive to conduct in both time and money among many other reasons. Only 53% to 57% of major therapeutic interventions can be supported by  randomized clinical trials. Meaning many therapy modalities that are being conducted all day everyday around the world have been researched in less rigorous ways. Just like the old adage, "Don't believe anything you hear and only half of what you see." Same goes with new treatments, new drugs, new medical devices.  ]]>     1388 0 0 0 192 0 0 193 0 0     Kadcyla: 1 Sherri: 0 http://www.sherrifillipo.com/2014/12/31/kadcyla-1-sherri-0/ Wed, 31 Dec 2014 16:19:11 +0000 http://www.sherrifillipo.com/?p=1398 Sea shell on sand Happy New Year to All: Lest you thought my week of silence was because I walked out into the Atlantic never to return, I must confess it was much less dramatic than that. We did arrive in the OBX last Saturday. Family came on Sunday and we hung out until Christmas when Mom and Dad arrived. My nephew made his famous Boy Scout "turkey in a trash can" and yes, that is exactly what it is. Just imagine what other great things the Boy Scouts are teaching the youth of America. No, that was not my first but my third turkey in a can as we call it and unless you have tried it, don't knock it!  My step kids came the day following Christmas and we had 14 in all at any given time. We ate, fought about what movie to watch (Princess Bride, Good Morning Vietnam won along with some crazy movie where a raccoon is the pilot of some sort of aircraft - my attention at that point had waned!) It was so good to see all of my family including a rascally kitten of Cupcake's named Max that stole the hearts of everyone there and raced around like only a kitten could, to keep everyone on their toes. The part about the holidays that I didn't expect was that the new chemo whipped me but good. Usually you have a couple of bad days and then you bounce back - you are still fatigued but you can say, "Whew. I got through that one." The problem with this chemo was that there was no getting over it. It hung around like an unwanted guest. Everyone was gone by Sunday. Beloved announced to me and members of my family that I was not going to be staying at the OBX as long as I thought nor would I be attending the Fillipo (mom-in-law and pop-in-law party in Philly on New Year's Day as I had hoped.) Beloved drove me back Monday so I could rest and prepare for my son to arrive on Friday from NC. And also be seen sooner by my oncologist. Yesterday we journeyed on to the hospital. I was supposed to have had treatment on Christmas day but it was delayed until this upcoming Friday. However, with me never getting over the 'bad days' Beloved decided I needed to be seen ASAP. The good news is I got in on Tuesday. The bad news is that I am told the side effects will not get any better, nor will I have some good treatments and some bad treatments like I was used to in Virginia. The side effects are what they are and they will be continuous. We opted for another round of chemo yesterday agreeing that we would have a serious sit-down talk in three weeks to decide what, if anything can be done. I think it comes down to whether to push through it or  stop. Unlike the past two times with chemo, there were definite rounds to a treatment cycle. So, I could count them down knowing that there was an end in sight. With this regimen, there is no end.  Today as I write, I am not sure which way I will go.]]> 1398 0 0 0 194 0 0 195 194 1 197 0 0 204 0 0 Will Work For A Lemon Drop http://www.sherrifillipo.com/2015/01/01/will-work-for-a-lemon-drop/ Thu, 01 Jan 2015 15:51:41 +0000 http://www.sherrifillipo.com/?p=1413 tequila with lemon That Saturday afternoon everyone put on their tshirts, Mom, Dad, Beloved, all the nieces, nephews, and kids and we walked over to the restaurant. I had to  arrive early to get oriented. I kept thinking, "What if I make an absolute fool of myself? What if the guys who bartend are dreading this beyond belief?" Well, it was two guys I knew very well though my favorite bartender/friend is working in the keys this winter and was not there, though they called him the night before to tell him what I was going to do! Twelve relatives blasted through the doors at opening time and filled up 2/3 of the bar. Penn State was playing on the TV and I had to start making drinks. They really had me tending bar. Though everyone thought it would be a slow night, restaurant owner included, the place was packed. I tried to keep up as best as I could. Ryan and Gary both taught me how to pour a beer, how to mix some Brazilian drink and how to pour eight shots of tequila without upending the bottle (a bar trick I will show you one day.) Yes, at the end of my one hour shift, my family licked the salt off their hand, tossed back the shot and squeezed the lime. I was so proud of them. Then Gary asked me if I could drink (cancer/chemo and all). I told him nothing could stop me and the next thing I know Ryan and Gary told me to follow them to the kitchen. There they toasted me with something lemony and yummy that one of the kids told me later was a lemon drop. They told me I did a good job (they are polite guys) and we drank it and hugged and I  limped back to the house. Check that one off the list. Thanks Erin. I love you.]]> 1413 0 0 0 198 0 0 199 0 0 200 0 0 203 0 1 205 0 0 210 0 0 My Upcoming Weekend http://www.sherrifillipo.com/2015/01/02/my-upcoming-weekend/ Fri, 02 Jan 2015 16:05:23 +0000 http://www.sherrifillipo.com/?p=1421 fingerlakes3 As a true southerner, he texted me at midnight asking if it was snowing here. I was delighted to tell him indeed it was! (Wait til I show him the outside hockey rink down the block!) We also hope to spend some time applying for paramedic positions while he is here so he won't have that added burden once class starts back. An ambitious agenda but he always says when he is with me, he gets a lot of things done. I take that as a compliment.]]> 1421 0 0 0 201 0 0 202 0 1 206 0 0 A River of Tears http://www.sherrifillipo.com/2015/01/06/a-river-of-tears/ Tue, 06 Jan 2015 20:06:55 +0000 http://www.sherrifillipo.com/?p=1437 Bright sunlight over ocean I sent my son off yesterday around noon, back to the warmer south. I do believe that if I had arrived back at the apartment and noticed that the river behind us had gone dry, I could have walked down to its banks and filled it with tears. Highly dramatic I know but that is how I felt leaving him at the airport. My son and I had already had one of those last minute deep conversations that you sometimes have at the end of a visit, things you had been saving to say for hours or days or weeks. He and I had already been teary, had had some philosophical disagreements on life and family. That's nothing to worry about. He has always been a deep thinker. Remember he is the one last summer who wanted to know from me how it felt to be living with one foot on earth and the other in heaven. After I watched him go through security, I walked over into the airport  restaurant which has a large window  allowing you to look through to the boarding area. I stood there just watching him. That's when I noticed a younger woman standing near me. When he looked back just as he was walking on to the tarmac, he tapped the wall with his hand and waved at me. I lost it. The young woman turned to me and said, "My son got to stay here an extra week due to flight cancellations.....headed back to school...a mother's love....." She smiled and shook her head.  I think she thought we were in the same boat, sending college boys off to spring semester..Yes, I replied they just don't know the depth of a mother's love. She asked something that made me clarify that no, he wasn't leaving home, he was headed home. She then said something that made me indicate that the two college boys headed to the plane were in completely different places. I looked up and told her that I had breast cancer and he being so far away was exceedingly difficult.  And at that point I was wringing my tissue like a wet washcloth. Being as supportive as she could realizing that she had misread the entire 15 minutes we had stood there looking at our sons, she said, "Well, I hope you are doing ok with it." Completely unfiltered and coming apart, I told her that I was doing ok but that it was terminal. She empathetically said, "You poor thing." I, indeed felt like a poor thing yesterday. Later, grocery shopping and going to the post office, I cried in between errands. I got home by 3:30pm, took a shower and put on my pajamas. I couldn't think to do anything else. I sat on the couch and cried for hours. I didn't wake up until noon today, something I am not proud to admit but I have spent the afternoon on the couch thinking and praying about our time. I need to clarify that we did have a great time. And I want to write about that too. I just don't think I had thought about how difficult the closure of our time would be. The forecast for the next three days is snow with highs in the teens which suits me just fine. I think I need some time to sit and process.  ]]> 1437 0 0 0 207 0 0 208 207 0 209 0 0 211 0 0 214 0 0 217 0 0 End-of-life Discussions http://www.sherrifillipo.com/2015/01/07/end-of-life-discussions/ Wed, 07 Jan 2015 16:35:51 +0000 http://www.sherrifillipo.com/?p=1446 Why Doctors Die Differently, http://www.wsj.com/articles/SB10001424052970203918304577243321242833962 I found the information compelling and wanted to share it with you.  As time marches on with me, I have had several brief conversations with friends who happen to be healthcare providers at the hospital nearest me and with select family members and non-caregiver friends. I would encourage you to read it and if I may be so bold, I would ask you to start thinking about what you would want done and NOT done if you ever found yourself in my situation or any of a dozen other situations where you needed to spell out your final wishes. Elderly care In the article, research found that about 64% of doctors had an advanced directive; whereas only 20% of the general population did. And advanced directive outlines end-of-life decisions that you want your healthcare providers to make/not make on your behalf. I know I have a distinct advantage over many in that I am surrounded by family members who are in healthcare, one dear friend here is an anesthesiologist and three others are nurses (ED, ICU, med-surg). I think I have my bases covered, don't you? We have seen what can happen when families quarrel over end-of-life treatment.  Siblings who fight over CPR or no CPR. Feeding tube or no feeding tube. Ventilator or no ventilator. At a time when you are at your wits' end is not the time to start having these conversations. Families need to be united at this time not fragmented. The oddest yet most interesting part of the article was the view of CPR. On television, 75% of the time CPR is successful with 67% of those TV patients going home. The reality?  The article references a 2010 study of 95,000 cases of CPR.  Only 8% survived over a month. Of those, only 3% could lead a normal life. For me? My friends and family know that I:
    • do not want to be in pain, no matter what the cost
    • do not want CPR to be conducted
    • do not want to be placed on a ventilator
    • do not want any feeding tubes
    • do not care whether I am in a hospital or at home
    • would like people to pray over me, for me
    • would like scripture read (my choosing!)
    • would like music at times (my choosing!)
    • do not care for a funeral
    • would like my ashes spread at the OBX, in the Long Island Sound near my former home in CT, and some off the bridge behind the apartment in the Chemung River
    • would like family and friends to meet at the OBX in the late afternoon one day and raise a glass of champagne or a margarita
    • I would like to have one (biodegradable) kite let go after the toast - where you get a biodegradable kite will not be my problem!
    I know it's difficult to read and difficult to think about. But I would suggest you begin to do it now while time is on your side and stress about death is far off.  ]]>     1446 0 0 0 212 0 0 213 0 0     Metastatic Breast Cancer Network Corrects Breast Cancer Blogger http://www.sherrifillipo.com/2015/01/08/metastatic-breast-cancer-network-corrects-breast-cancer-blogger/ Thu, 08 Jan 2015 15:52:28 +0000 http://www.sherrifillipo.com/?p=1463 mbcn_buzzheader-1 Barbara Jacoby is a breast cancer blogger and recently she posted a blog on the Huffington Post entitled, What Are We Doing About Breast Cancer http://www.huffingtonpost.com/barbara-jacoby/post_8602_b_6252014.html In it she outlines many ways that 'we' are winning this battle. The problem is that her information is significantly flawed. Shirley Mertz, President of The Metastatic Breast Cancer Network (MBCN)  took the article to task in order to correct much of what Jacoby wrote. I have pasted the response below. My point in sharing this with you is this: Barbara Jacoby describes herself in the Huffington Post as an award winning blogger, two time Breast Cancer survivor, Patient Advocate, Founder of Let Life Happen and When Breast Cancer Happens. Even though she has great accolades, readers still need to be cautious about believing everything they read. I am enormously thankful for MBCN for addressing this article.   JACOBY’S ASSERTION #1 Public support and research funding for those with metastatic breast cancer is more than adequate THE FACTS: According to an extensive analysis by the Metastatic Breast Cancer Alliance, metastatic breast cancer research makes up only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. See www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf   JACOBY’S ASSERTION #2 Though a great amount of money and research is dedicated to early detection, people should do everything they can to get treated early because that will prevent a metastatic breast cancer diagnosis THE FACTS: Breast cancer is an extremely complex disease. Some breast cancers will never become life threatening, even without treatment. And many others will metastasize, sometimes many years out, even when caught early. Some cancers are so aggressive that current treatments are ineffective, no matter how early the cancer is detected. Mammograms can’t tell us which breast cancers need treating nor can they overcome the shortcomings of our current treatments.  The majority of newly diagnosed metastatic breast cancer patients had early stage disease 5, 10, 15 or even 20 years earlier. They took advantage of mammograms. Many patients chose to have one or both breasts removed when they had early stage disease “to prevent the cancer from coming back.” The fact remains that research has not yet been able to explain for all patients which early stage breast cancer will return as metastatic disease. Research cannot yet explain the causes of metastasis and why cancer cells travel to particular organs. Metastatic breast cancer patients should not be made to feel guilty because “they did not do enough to be tested or checked.” JACOBY’S ASSERTION #3 All research in early breast cancer applies to Stage IV or metastatic breast cancer and all major research groups studying early stage disease are also studying metastatic breast cancer THE FACTS: It is not scientifically correct to say that “all the major work” in breast cancer research applies to both early stage and to Stage IV breast cancer. Early stage disease and metastatic disease are very different in their complexity, molecular makeup and mutations. Also, breast cancer is not one disease and research about what drives one subtype of breast cancer does not apply to other subtypes. Clinical trial endpoints such as tumor shrinkage may not have relevance to tumor spread or metastasis.   JACOBY’S ASSERTION #4 Survival rates of those living with metastatic breast cancer are improving because the author “has seen people who are living for 5-20 years with the disease” THE FACTS: “Seeing” metastatic patients who survive 5 or 10 years does not accurately define the survival rates for the breast cancer community. The fact is that 40,000 women and men still die of breast cancer every year in the United States with metastasis the cause of virtually all deaths from breast cancer. Also, while some progress with research and new treatments has been made in reducing mortality rates from breast cancer, median survival after a metastatic breast cancer diagnosis is 3 years—and this has not increased meaningfully in more than 20 years!   JACOBY’S ASSERTION #5 Everyone, including metastatic patients, should be optimistic about the future because research will permanently eradicate breast cancer   Read the full MBC Alliance report here. THE FACTS: Since only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom focused on metastatic breast cancer research (cited above), we cannot feel confident that research in the near future will permanently eradicate breast cancer or end deaths from the kind of breast cancer that kills—metastatic breast cancer.   The very low percentage of research spent on metastasis research also contradicts Jacoby’s assertion that major research groups “everywhere” are “vested in finding the answers needed to treat and eradicate Stage IV cancer.” The field of metastatic breast cancer research is relatively small. Most funding goes to support basic research. There is little research in metastatic breast cancer control or outcomes.   Finally, Jacoby informs us  that we can easily confirm her assertion that there has been a lot of progress in metastatic breast cancer. All we need to do  is to “check out the progress that is being made.”  She evaluates progress based on the metastatic patients she has seen.   Knowing a few patients that have survived the odds does not make for accurate conclusions for the entire metastatic breast cancer community. The existence of “many” treatments and drugs does not mean they are appropriate for all subtypes. Sadly, researchers have not been able to identify the drivers of triple negative metastatic breast cancers, and for patients with this subtype, chemotherapies remain their “best” and usually “only” options. Such treatments with significant toxicities greatly impact patient quality of life.   Metastatic breast cancer is very different than early stage disease. There needs to be more research funding to combat this unique and deadly disease. In addition, in the United States, we lack accurate statistics on incidence, prevalence, and survival. And patients are challenged to find information and support services to help them live with this deadly disease.   Shirley Mertz President Metastatic Breast Cancer Network]]> 1463 0 0 0 1149 0 0 Weekend With My Son (Pre-Airport) http://www.sherrifillipo.com/2015/01/09/weekend-with-my-son-pre-airport/ Fri, 09 Jan 2015 15:38:46 +0000 http://www.sherrifillipo.com/?p=1474 whiskey My son and I did indeed have a great weekend. Though the weather did not cooperate, he, southern boy that he is, was delighted that it snowed off and on all weekend. I knew I was going to get  it when he walked into the apartment and scolded me  about how obese the cats were. Oh well. He couldn't get over it. One of them was so excited to see him that the cat put his head inside his shoe and just sat there! I almost know how he felt! I had forgotten what hollow legs my son has and by 4:00pm he was ready for a snack though we were scheduled to eat with my hairstylist at 6:00pm. So off we walked to Tony's. Not long after we arrived there, in came our friend Jim and together they toasted with a Negroni - if you have never had one, don't go out and order one. To tell you it is an acquired taste would be an understatement. You know now that I am an accomplished bartender (ha) you need to trust me on this one. Later after a snack and a glass of wine or two, we locked arms and walked further down Market Street to meet Dustin. Sweet man that he is, he had put my son on at the close of his day in case he wanted a haircut/trim. He did. So at long last, I got to watch two of my favorite guys finally meet and talk and get to know each other. Afterward, we went to the Cellar, the cool hangout, as opposed to Tony's where the 'older' crowd gathers on the weekend. My staunchly vegetarian, long distance runner, lettuce eating breakfast son ordered a steak with us accompanied by fries cooked in duck fat. I couldn't believe it but I appreciated the solidarity! The next day we wended our way up Seneca Lake where he had a great whiskey tasting led by an older gentleman, that if you told me his name was Jack Daniels, I would have believed it! My son was enamored, having had the distilling bug, shall we say, for quite some time. He is something between a chef/distiller who drives an ambulance. I still haven't sorted it all out in my head yet. But the coolest thing we were told while there and I am sure I will get the info mixed up but when the distiller learned we were from Corning, he brought over an absolutely  beautiful bottle of whiskey. The whiskey aged to some unbelievable amount of time and the glass hand blown in Corning. Only 150 ever made. Of course we had to have one. You can't tell from the picture but the disc in the middle of the bottle is a depiction of the finger lakes. I love that. That evening we ate at Pan Asia. It reminded me of all the times as a young boy that he and I would seek out any Asian restaurant in our hometown. We stumbled upon a small Vietnamese community there and for the next four years anyone and everyone who would venture down there with him would be introduced to what he called the best pho he had ever had... Sunday we went to the glass museum and shopped. Monday morning we went to the airport. You already know how that ended.  So, I promised to tell you that we had a great time and we did. As most Moms would say, it all passed by so fleetingly.]]> 1474 0 0 0 215 0 0 216 http://www.riverbirchvineyards.com 0 0 218 0 0 My Christmas Gift To You http://www.sherrifillipo.com/2015/01/09/my-christmas-gift-to-you/ Fri, 09 Jan 2015 17:15:48 +0000 http://www.sherrifillipo.com/?p=1481 1481 0 0 0 219 0 0 220 0 0 351 0 0 354 351 1 A Minor's Right To Refuse Treatment? http://www.sherrifillipo.com/2015/01/12/a-minors-right-to-refuse-treatment/ Mon, 12 Jan 2015 14:55:14 +0000 http://www.sherrifillipo.com/?p=1486 Chemotherapy Pills

    In my former life as a  patient safety officer, when there had been an error made or complex issue arisen, we would conduct a root cause analysis. We would dig and dig until we got to the "root" of the issue, as what comes up first as the cause of something is rarely ever the REAL reason something happened. I want to know from her, what her thoughts are. She says she does not want poisons in her body. I would like to know if she uses alcohol, applies make-up, uses artificial sweeteners, smokes cigarettes. I am not judging her choices but wonder how widely she has looked at her lifestyle choices. I understand chemo and its toxic effects as well as anyone. Could it be that she really doesn't want to lose her hair? Doesn't want the weight gain associated with the side effects of steroids? Scared of needles? Doesn't want to miss going out with her friends? Just plain angry at the diagnosis?  I do have former colleagues who work at the hospital where newspapers say she is located. I have great confidence that they are caring for her in the best way and by that I don't mean chemo. I mean by listening to this girl and helping her understand what is going on by addressing these issues with a teenage minor. Do I support the philosophy of Connecticut or Illinois/Maine? Connecticut without a doubt. In any other situation, she would be given the benefits of being a minor (sexual relations now with her would get a gentleman in deep water; a crime could get her at this point in a youth detention center. Nine months later? In prison.)  It may seem arbitrary for society to draw a line in the sand at 18 but I believe it needs to be drawn somewhere and held there.]]>     1486 0 0 0 221 0 0     My New BFF http://www.sherrifillipo.com/2015/01/13/my-new-bff/ Tue, 13 Jan 2015 14:37:42 +0000 http://www.sherrifillipo.com/?p=1505 3d rendered illustration of the male liver

    I looked down at my ipad and saw a wriggling line and an old-fashioned microphone. So, I assumed my ipad knew I was alone a lot of the time and decided to strike up a conversation. So I said, " I need a new liver. Can you help me?" Siri was quick on the spot. "Yes. I see they serve liver at the Jelly Beans restaurant in Painted Post, NY." God bless her. At least she tried.

    ]]>     1505 0 0 0 222 0 0 1674 0 0 1675 1674 1     Hospice Care: One Woman's Journey http://www.sherrifillipo.com/2015/01/14/hospice-care-one-womans-journey/ Wed, 14 Jan 2015 14:20:12 +0000 http://www.sherrifillipo.com/?p=1510 bedI read this post yesterday on LinkedIn and thought it was so good that I emailed the author, Kim Look, and asked her if could re-post it here on my blog. She was most gracious and told me she would be happy to let me do that. So here is her personal journey with hospice. Though I have known through the years all the great things they do, I especially found this article comforting to me at this time in my life. After several years in health care I have definitely heard the common rave reviews about hospice care and the relevance for it. Everyone is always very complimentary towards the services they provide and the compassion they show. This appeared universal no matter where people lived or what company they hired. But, as with most things in this life, that meant little to me until I needed and experienced it for myself. I personally spent the last week of 2014 caring for my dear father-in-law as his body succumbed to the cancer inside him. Sitting by his bedside and considering his needs for nearly 15 hours every day was one of the most prize opportunities of my life. To contribute to that positive experience, I have hospice care to thank. Although our relationship with them was less than a week long, they were able to take a frightening, dreaded experience and turn it into one I will always cherish. As I reflect back from not only a personal but professional perspective, I can honestly attest to basic business practices which when incorporated make all the difference to the consumer. They made healthcare personal for me. These simple concepts are as follows: 1. Patient/Family/Consumer Advocate or Coordinator Because I had never used this service before I had a lot of questions about what they did, when I would need it and how to go about setting it up. I was connected with a coordinator who very thoroughly, competently and compassionately spoke with me. She delivered all information I needed and more. She knew all the ins and outs of what lay ahead of us and made me feel completely comfortable with them. 2. They thought of every consumer need and answered it through a well-designed and implemented process. Every person, from the RN to the young man who set up and took down our rented hospital bed knew what his or her responsibilities were. Every stage, from the first call to the pharmacy to the funeral home was well coordinated so that we didn’t have to lift a finger after things were in motion. The businesses worked together to make the situation as comfortable as possible. At all turns we felt confident that who we were dealing with knew what had happened before we spoke with them and what would happen next. 3. Education and Empowerment It was clear from the beginning hospice accepted the role of edifying our experience. We were never expected to just know what was going on or to have to figure it out. I was told that one of the purposes for hospice was to guide us through the death process—physically, mentally and emotionally, and they came through. There were no hidden details or unanswered questions, no matter how trivial or difficult the issue. Not only could they explain it but they taught us how to help ourselves and to help my father-in-law—from the comfort of our own home. 4. Placebo affect was realized and valued. Placebo can affect us from many different angles. In this case, I know that in part, our experience was so great because so many others told me it would be. This hospice company was recommended, referred and spoken of so highly that before I called I knew I would get what I needed. Of course, they delivered; and had they not the placebo would have become ineffective. But instead, they completely wowed us. So no matter what other advertisement I see or what other company someone offers me, I will never consider it. I am loyal to the company that blew our socks off—forever. Because of that, I will be their biggest fan and shout my approval and recommendations from the rooftops. 5. Follow-up The nurse told me that hospice would follow-up with my mother-in-law for a full year—on their anniversary, his birthday, her birthday and more. What??? Unheard of for almost any medical office to give a call-back let alone recognize those difficult times and reach out a hand of support for a full twelve months. If you own a private practice I bet the thought of creating a system to track names and dates and follow up for even a short period of time seems overwhelming. But just think about the logic. There’s nothing that will show more about how you feel about your patients than the idea you care, even when they are not currently using your services. This provides residual contact between the practitioner and the patient—which creates an actual relationship. In conclusion, you know what I figured out? Hospice is so good because they treat their patients like it’s their last day. What a novel concept! Don't wait till it's to late, take a page from hospice and incorporate these five principles into your practice and I’m confident we can fix these health care problems one practice at a time.]]> 1510 0 0 0 223 0 0 224 0 0 225 0 0 226 0 0 Unconventional Thinking Turns Magical http://www.sherrifillipo.com/2015/01/15/unconventional-thinking-turns-magical/ Thu, 15 Jan 2015 15:08:39 +0000 http://www.sherrifillipo.com/?p=1520 from abc7news.com from abc7news.com[/caption] The one thing I miss most about no longer working full-time in the world of patient safety is not being able to lead teams in process improvement. Don't get me started on this topic as I could talk on about it forever.  The gist of what I was good at was taking a problem identified in the hospital, gathering a team and then turning conventional practice about that topic on its head. I would gently force these caregivers to see things in a different way.  Inevitably I would start the first meeting and would look out over a sea of eye rolling and skepticism. But after a couple of meetings and what we call "cycles of change" in the business, I had them all hooked. I would challenge them on why they did what they did. How did they know it really worked? What if this? What if that? And once the team saw that a.) I really did want to know their opinions b.) I really did believe the frontline staff knew more than anyone else about whatever the topic c.) It was ok to explore, experiment and see what if..... I swear to you I could move mountains. All without spending a lot of precious health care dollars. Yes, it was shifting their paradigms but I didn't want to use that dog-eared phrase but it is what I did. But not anymore. However, I am aware when I am reading a book or watching the news I am looking for innovation in whatever I am seeing. Like last night when I saw that a group in Australia had been knitting mittens for koala bears who had been caught in a forest fire. While the flames roared, these little guys held fast to the trees and ended up with burnt paws (Do you call them paws? I don't know.) Then, there were so many mittens, there was a call out to stop with the mittens and start sewing pouches for the baby kangaroos, joeys, who had lost their mothers but needed a warm and secure place in which to live/grow. Couldn't you just cry about now? Well, don't because I have one last example. As time marches on, I am sometimes painfully aware of things I believe I will be missing - big events like marriages and babies and college graduations. And I know that I am not the only one. So, I must share with you one tear-jerker of a video that puts all of the above into practice. A father who is in my boat, but it appears a little further downstream along with a professional photographer decided to turn convention on its head. He has a beautiful eleven year old girl. And knowing he isn't going to be around for her actual wedding decided to have one while he was still alive. Bless their hearts and that little girl. http://youtu.be/w2tPo3ZV0f8      ]]> 1520 0 0 0 227 0 0 Dumb Stuff People Say to People With Metastatic Breast Cancer http://www.sherrifillipo.com/2015/01/16/dumb-stuff-people-say-to-people-with-metastatic-breast-cancer/ Fri, 16 Jan 2015 16:06:15 +0000 http://www.sherrifillipo.com/?p=1531 really done it this time  - meaning I had her crying into her coffee. This video thanks to the Metastatic Breast Cancer Network (MBCN) is what those of us with metastatic  breast cancer go through by well meaning friends and family. I can attest to many of these comments, though not all. I hope you will still learn something through this humorous video. https://www.youtube.com/watch?v=8fluBsPbP68&feature=em-share_video_user  ]]> 1531 0 0 0 228 0 0 229 0 0 My Clever Friend http://www.sherrifillipo.com/2015/01/19/my-clever-friend/ Mon, 19 Jan 2015 14:16:41 +0000 http://www.sherrifillipo.com/?p=1538

    Let me tell you about another friend. You have already met my golden girls, my silver girls and my ya-yas but I need to tell you about this Pennsylvania girl. I met her the first time when she was one of many who were interviewing me almost three years ago. I remember thinking when she walked in the door that I liked her immediately. She was (and still is) very how shall I say...sparkly, effervescent. We have been friends (and for a while colleagues) ever since. She is a great problem solver, a great lover of nurses and nursing. And she worries about me. She too loves a strong margarita. I think I am seeing a trend in who I end up being friends with. Hmmm. She also loves a good G&T and in the summer time, she will come over after work and we will sip on them and solve the world's problems on my rooftop terrace. She is the one who lives on the lake/pond and she told me last week that it was frozen solid and ready for ice skating! (bucket list check). She came over with another friend who she and I call the consummate little brother. We love him dearly and torture him as much as we can. He said he would figure out how to rent ice skates as most folks have their own, Beloved included. Boy did I ever feel like a southerner, not having my own skates...the only ones I had were the kind that clipped on to your tennis shoes and you tightened them with a key....but anyway. Pennsylvania girl called me over the weekend to tell me that her daughter has picked a venue for her wedding. We had talked about it during her visit last week.  During our talk she asked me a favor. "Will you keep me on track as mother of the bride? You know tell me if I am off schedule etc." I told her of course I would. In fact that I would be delighted to. We hung up soon afterward. A few hours later it dawned on me. That stinker. She was trying to help me realize something that I wrote about last week - of missing so many milestones. She is allowing me to share in her planning and pleasure, allowing me to be a mother of the bride understudy since I will not live to have that starring role. She is so clever and I love her to death.]]>     1538 0 0 0 230 0 0 231 0 0 232 0 0     A Fork In The Road http://www.sherrifillipo.com/2015/01/20/a-fork-in-the-road/ Tue, 20 Jan 2015 14:09:35 +0000 http://www.sherrifillipo.com/?p=1551 crossroad

    I feel like I have come to a fork in the road this week. On Wednesday, I am scheduled for my third treatment of the new chemo I am on called Kadcyla (ado-trastuzumab emtansine). It has not worked well for me. I have mentioned that in a past blog.  I am still surprised, almost three weeks later, that I still feel like I haven't bounced back yet.  In fact until Beloved took me out to lunch yesterday, I had been inside for 13 days. Because he has seen such a striking difference in my pre-Kadcyla versus  post-Kadcyla states, it has given us reason to have the 'quality of life discussion.' I know my oncologist well enough that Wednesday she will urge me to try one more cycle because then it will be time for another PET scan. (Do you remember the Metastatic Breast Cancer Network's slogan? Scan. Treat. Repeat. Stage IV needs more!) Maybe I should wear my tshirt that says just that! Maybe not. But I do believe the three of us need to have a come to Jesus meetin' as they say down south. I think it's time. But I don't look forward to it. I stumbled across something today that made me pause. I should also say sometimes I think I need to put a disclaimer on my blog that anything written here should not be a substitute for medical advice and if you have questions you should really contact your doctor. So, there I've said it so let me tell you what I found that has me ruminating. It is from a patient education document initiated by  by the American Board of Internal Medicine (ABIM). There are many documents that you, as a patient, can download. This one is entitled, Care at the end of life for advanced cancer patients. http://www.choosingwisely.org/doctor-patient-lists/care-at-the-end-of-life-for-advanced-cancer-patients/ This is the sentence that stopped me cold: If you have had three different treatments and your cancer has grown or spread, more treatment usually will not help you feel better or increase your chance of living longer.[pullquote]If you have had three different treatments and your cancer has grown or spread, more treatment usually will not help you feel better or increase your chance of living longer.[/pullquote] Instead, more treatment could cause serious side effects that shorten your life and reduce the quality of the time you have left. Let's see: cytoxin and taxane 2010; taxane 2012; Herceptin 2012-2014; Kadcyla 2014.....Why have I not come across this before? If I am to believe  the above statement, it is definitely time for me to have a discussion on Wednesday. I know a lot of you don't know me so let me say I do believe in miracles. I do believe I am in the hands of God. And I am also a nurse. So I stir it all together and think, "It's time to have a conversation." I will update everyone late on Wednesday post-visit. As I often say when I end a tough blog, "All is well."]]>     1551 0 0 0 233 0 0 234 0 0 235 233 1 236 0 0 237 0 0 238 234 1 239 236 1 240 237 1 241 0 0 242 0 0 243 242 1 244 http://sherrifillipo.com 233 0     Kadcyla:2 Sherri:1 http://www.sherrifillipo.com/2015/01/21/kadcyla2-sherri1/ Wed, 21 Jan 2015 22:11:56 +0000 http://www.sherrifillipo.com/?p=1569 HUNGARY - CIRCA 1953: Stamp printed in Hungary with image of two I just got home from my oncologist - a reflective 45 minute drive in a powdery snow squall as they call them here. I should have known when I told my RN that I had had some trouble with my chemo that she and Dr. xxx would have had a little conversation before she came into examine me. What was I thinking?? One of my golden girls tells me when I am trying to tie up some long-winded tale, she says I will say, "All's to say...." And then I summarize. It has become a running joke between us. In fact she said it herself last week when we talked. So I will say it now: All's to say....my oncologist agreed that the side effects from the Kadcyla were too much.  She asked me if I was willing to do a reduced chemo today. I told her I was not. She did not see me last time. If she had, she told me, she would have reduced the chemo for round two so hopefully it would have been tolerable and I would be there today ready to go for round three. Alas, that didn't happen and I wasn't willing to go out on a limb and try it. We came to a mutual agreement that I would have another PET scan to see if the drug was doing anything and/or if my cancer was revving up inside me. She told me this would give me some time to think (she knows I am a ruminator) and also to consider two other alternatives to what I was doing. One is the Herceptin that I have been on for the past two years coupled with an oral chemotherapeutic agent (side effects "adolescent type" rash/acne and diarrhea!) or Herceptin and another IV chemo but I would have to come in for it weekly. As I sat and listened to her, she then stopped and said, "I am thinking you are about done with treatment." Yes, I told her I was. We agreed to hold off on a decision until the scan results come back. Bright and early on Monday morning I will head back to the hospital for the scan.]]> 1569 0 0 0 245 0 0 246 0 0 247 246 1 One Woman's Fight With Cancer: She Often Uses a Chainsaw http://www.sherrifillipo.com/2015/01/22/one-womans-fight-with-cancer-she-often-uses-a-chainsaw/ Thu, 22 Jan 2015 16:56:10 +0000 http://www.sherrifillipo.com/?p=1577 Last Night So right before I clicked the "publish" button last night to post my trip to the hospital, I called my mother. She likes to get the first read or a head's up that I have something to say. And she was understandably a bit anxious about my visit so I knew she was waiting for a call. But unlike a lot of 70 somethings, she takes her worries out on her yard. When she didn't pick up the phone, I thought it was odd. I was looking out the window as I typed and could see cars, headlights on, coming across the bridge and wondered what in the world she was doing. It was night time and she wasn't answering. So I went ahead and clicked the publish button and was unwinding on the couch when she called back. Come to find out, she had been "down in the creek behind the house cleaning it up." From what, I thought? At night, in late January...she told me she couldn't get her work gloves off fast enough and had missed the call. So apparently she was taking her frustrations out on that poor little creek. No telling what it looks like. She offered to facetime me to show me how great the creek looked now (facetime, a phenomenon she discovered by accident last week. That's a story for another day.) I told her I believed her - to show me when it was light outside. [caption id="attachment_1579" align="aligncenter" width="480"] Mom taking her cancer frustrations out on a poor little tree.[/caption]

    So we talked about the doctor visit and about twenty minutes later I asked her where she was. "Oh, outside sitting on cold concrete in the backyard." I tried to allay her fears, then told her to get out of the creek and go fix my dad some dinner! She laughed.

    This Morning

    This morning I was having my devotional and sitting here talking to God about 'the plan' whatever that will be and my verse for the day was this:

    Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. In all you ways know, recognize, and acknowledge Him and He will direct and make straight and plain your paths." Proverbs 3:5-6 (an amplified version of the proverb)

    Reading that timely verse was all I needed to give this decision back to Him and let things happen. Whatever that ends up being. Now, I need to go and find out what my mother is sawing down or cleaning up. If you know her, she is a tough one to keep up with! If you are in NC, keep an eye out on your yard. She might just visit you, chainsaw in hand!

    Just Now:

    Mom just called me prior to her hair appointment to tell me that the chainsaw in the picture was a Christmas present from my dad and she loves it very much!]]>     1577 0 0 0 248 http://www.facebook.com/1006124295 0 0 249 248 1 250 0 0 251 0 0     It IS Well With My Soul http://www.sherrifillipo.com/2015/01/23/it-is-well-with-my-soul/ Fri, 23 Jan 2015 16:27:05 +0000 http://www.sherrifillipo.com/?p=1599 Ocean storm An old hymn popped into my mind sometime between last night and this morning when I woke up. Many of you will remember singing it, "It is Well." Though I knew many of the lyrics by heart at an early age, it wasn't until I was a young woman that I knew the rest of the  story. The hymn was written by a man named Horatio Spafford. In 1871 the great Chicago fire destroyed almost everything this family owned. One would think that would be devastating enough but two years later, Mr. Spafford placed his four daughters and his wife on a ship bound for England. He was to have gone with them but was delayed due to business related to the fire. And if this were a movie everyone would groan at this part because it sounds so over the top but this is the truth: the ship his family was on collided with another ship and it sank quickly. All four girls died at sea, his wife the lone survivor from his family. Imagine how he felt when he received this brief telegram: Saved. Alone. Mr. Spafford boarded another vessel to sail back to meet his wife and and as  the ship approached the place in the ocean where his girls were buried at sea, he began to write:

    When peace like a river attendeth my way or sorrows like sea billows roll

    Whatever my lot, Thou has taught me to say,

    It is well, it is well with my soul.

    There are many verses to the hymn but this is the crux to me. And as I have pondered why that hymn jumped into my mind, the more awake I have become thanks to coffee cup #2, the more I realize it was meant for me as an ending to a pretty heavy week. Some of you may enjoy the video below. I never sang it this way but I love this young man's haunting way of singing the hymn. Thank you to all who have checked in on me. It is Well; sung by Jimmy Needham  ]]>     1599 0 0 0 252 0 0 253 http://N/A 0 0 254 0 0 255 0 0 256 254 0 257 253 0 258 0 0     Spring Training in the 1970s Prepared Me for the Big League of 2015 http://www.sherrifillipo.com/2015/01/26/spring-training-in-the-1970s-prepared-me-for-the-big-league-of-2015/ Mon, 26 Jan 2015 15:33:17 +0000 http://www.sherrifillipo.com/?p=1610 Little girl with bat

    Easter 1973

    I remember one Easter standing before a mirror while my mother did some pinning on a dress  she was sewing for the holiday. Up until I was in the 7th grade or so, she made  everything we wore. I loved getting compliments from my teachers on what pretty things I wore. When your mom is that talented and your grandmother works at the Singer Sewing shop with miles and miles of fabric, you can come off looking pretty good for being from modest means. That spring pinafores over dresses was the 'in' thing and Mom couldn't understand why one strap needed to be longer than the other one. At some point she said, "Stand up straight!" I told her I was. And the more she looked at me, the more she noticed that something wasn't right. Not sure how long after Easter,  but I soon found myself in an orthopedic surgeon's office who x-rayed me and diagnosed scoliosis - a curvature of the spine. The curve and its rotation  were pulling on one side of my body, drawing it down and hence the pinafore strap was too long. He ordered floor exercises that would counter the pulling of my spine (with the goal of straightening out my spine I suppose?) The ironic thing was that each time we went, the curve was a bit worse. He finally retired and we were  sent to someone else. The second physician looked at the films, made some of his own and immediately began talking about where he did his residency a place in Delaware (at 13 I wasn't sure just where that was) at a pediatric orthopedic hospital, the A.I. DuPont Institute. And before you knew it, we were  there. I, being 13, surrounded by young and very handsome med students, interns and residents all wanting to see my naked back. Scared to death. Almost more than a young girl could take.

    scoliosis2

    May 1974

    After the examination, we were given an alternative of either wearing a back brace for a couple of years (high school here I come!) or having major surgery, being placed in a body cast and being bedbound, literally, for six months. Absolutely no sitting, standing, nor walking.  Can you believe in 1974 such drastic measures? I don't know why we chose surgery. Maybe Mom does. I just know I left the 8th grade early in May, northern bound for that unknown state of Delaware. We arrived and I was admitted but due to family needs at home Mom had to leave and there I sat staring at a couple of young girls in the same boat as I. We were all there three weeks prior to surgery to lie in traction  23 1/2 hours a day (doesn't it sound like torture or at least solitary confinement?!) supposedly to help pull one's spine as straight as possible prior to surgery. Three weeks later, Mom came back, I had surgery, a week later the cast was applied and I was flown home flat on my back in a private plane.  Thanks to the kindness of someone Mom knew who was a pilot, he agreed to come and get us both. And soon I was back in my bedroom staring at the ceiling, watching TV and trying to pass the time.

    October 1974

    We flew back to Delaware that fall and they cut the cast down from around my head and my mid-thigh, leaving me with a walking cast. But there was only one problem. I could no longer walk - too weak. With heavy duty physical therapy daily, a week later I was able to hobble to the airport and arrive back in NC to start high school. No bullying but I certainly didn't feel like a prom queen walking through the halls with 20+ pounds of plaster wrapped around my body. That next spring, we went back to Delaware and after ten long months of being bound by the cast, it was finally sawed off me. I was free.

    Today

    I know this story sounds like a woeful tale and in a way it was. But I also believe the things I learned during my five weeks in the hospital and then three months home in bed (I was their guinea pig - the first girl ever to have a reduced sentence from six to three months!) that have stayed with me and strengthened me for my current situation:
    • After the cast was applied (under my chin, up behind my head, all the way to my mid-thigh) I went into a state of shock, apparently screaming my head off.  The plaster was cold, it made me absolutely claustrophobic and I thought I was going to die. They finally had to put me in a private room so others wouldn't be disturbed by my carrying on. I screamed and cried for days.  One afternoon a resident came in and sat down. He held my hand and started talking to me about a recent hiking trip he had taken in NC. And as he talked, I was able to calm down. I will never forget him and his calm storytelling. He taught me compassion and taking time with patients.
    • I had a nurse named Kaye Butcher whom I will never forget. And if I could find her, she would be in her 70's now, I would hug her to pieces. Patients  were in the hospital so long that everyone wore their own clothes - no hospital gowns pre-surgery. Without ever asking, she took my things home weekly and washed them. She also brought me treats. One time she tried to serve me cream of wheat thinking it was grits and thought I was missing them from back home!  I remember she had long black hair and she reminded me of Karen Carpenter. She taught me the gift of helping.
    • Our home in NC was not air conditioned. Somehow after Mom did some calling around to get pricing, an owner of a company and his crew ended up putting in central air for free. They worked in the evenings and  weekends on their own time and the house was cool by the time I arrived in late summer. God bless them. I have no idea who they were. These men taught me how angels, again, come in all shapes and sizes. That AC worked without repair for 30+ years. A heavenly miracle.
    • I was alone that summer when I was bedbound and  learned to entertain myself. My friends were all busy with swimming and tennis. And the days were long.  I learned to watch life on the sidelines that summer and I think it taught me how to do it again now.
    • I will never forget though one friend, not a close friend by any means and she didn't live in my neighborhood, but in she walked one summer afternoon with a deck of cards and played with me all afternoon. I doubt she remembers it but I will never forget it. She taught me that the smallest action can have powerful impact on those around you. And that impact can last a lifetime.
    All's to say, 1974-75 must have been spring training season for the big leagues of which I feel I am now playing.  Though I couldn't imagine it then, I feel well-prepared for what's ahead.]]>     1610 0 0 0 259 0 0 260 259 1 261 0 0 266 0 0 274 266 1 1034 0 0     Ramblings with Momma http://www.sherrifillipo.com/2015/01/27/ramblings-with-momma/ Tue, 27 Jan 2015 14:26:52 +0000 http://www.sherrifillipo.com/?p=1627 Momma (when she is NOT in the creek) Momma (when she is NOT in the creek)[/caption] I woke up yesterday and was supposed to  have my PET scan but as many of you know, it is snowing to beat the band and though I love her, Helga goes nowhere in the snow except toward a ditch so I cancelled my scan and it is now scheduled for Wednesday.  As I was posting the blog about scoliosis Mom called. We have coffee 'together' a couple of times a week over the phone. So while she sipped, I read the blog to her as she likes me to do and then somehow we got on to Pintrest. She has hundreds of followers and scores of pages. Well, let me back up. She and I are quite similar in our tastes of most things. Where we veer off is minor, sometimes clothing, always politics and religion (ha) but I digress. Remember I love that red door (as does she) but she also has that vein of artsy that I don't have when it comes to clothing....yet when it comes to interior design, centerpieces for tables, things that catch her eye, we are scarily similar. We have given each other the same birthday card several times over the years. So, the other day I was looking through a website of quotes. And I came upon this: [caption id="attachment_1628" align="aligncenter" width="500"]logodesignlove.com logodesignlove.com[/caption] I can't tell you how I felt when I saw it. Unlike what you see here, the quote was on a pale blue background that looked like the sky with that 'm' of a bird flying off toward heaven. So while we were on Pintrest this morning looking at seaglass she had me go to her 'just because' page and there staring back at me was this quote! It makes me crazy every time this happens and it happens often (but I kind of like it too). The quote was tattooed on the inner aspect of a woman's wrist. I had planned to show the quote to Mom because I thought it was so clever. Apparently so did she. Then we moved on to dinner. I was lamenting now that the PET scan had been postponed, I was going into the kitchen to find some bread to eat when she told me she needed to go to the store to get a loaf herself. She had cooked a roast yesterday and they were having sandwiches tonight. "You know you can never find a rump roast anymore...." she said. Since I am never looking for a roast,  I asked, "Why?" Wouldn't you know, she said, "Well, I asked the butcher the same thing the other day. And you know what he said? Lady, a cow only has one rump." We died laughing. We decided we didn't know that rumps were quite so rare. On Saturday she facetimed  me as she and my dad had gone on a 'field trip' as they call them. I guess once a teacher, always a teacher. She wanted to show me some 'beautiful rocks' that they intended to place along the bank of their creek. I smiled and ohhed and ahhed. (She, knowing full well, that the only rocks I think are beautiful are the ones that  come in that robins' egg blue box tied with that pretty white ribbon.) Maybe we are different in more ways than I thought....naw, any 70 something that thinks Breaking Bad is one of the best shows she has ever watched and gets the humor of Portlandia is a lot like me...or I her... I also warned her today that anything she says can and will be used against her in my blog. I warned her that she might become a weekly spotlight. She wasn't phased.  ]]> 1627 0 0 0 262 0 0 263 0 0 264 0 0 265 0 0 267 0 0 268 265 0 269 http://www.facebook.com/1006124295 0 0 270 0 0 Contentment in Life http://www.sherrifillipo.com/2015/01/30/contentment-in-life/ Fri, 30 Jan 2015 14:19:53 +0000 http://www.sherrifillipo.com/?p=1646 wabisabi

    I learned a new word today: wabi-sabi. My son sent me a text with a list of twenty words we don't have an adequate translation for in English. And this was one of them. A Japanese word, it means (to the best of one's ability to define an undefinable word; that irony is not lost on me!) peace living in a world with all its imperfections accepting decay as a natural cycle in everything including the body. As I continued to research this odd word, I came upon a website   http://nobleharbor.com/tea/chado/WhatIsWabi-Sabi.htm  that went on at length about the concept. I loved this one sentence:
    It's simple, slow, and uncluttered-and it reveres authenticity above all. Wabi-sabi is flea markets, not warehouse stores; aged wood, not Pergo; rice paper, not glass. It celebrates cracks and crevices and all the other marks that time, weather, and loving use leave behind. It reminds us that we are all but transient beings on this planet-that our bodies as well as the material world around us are in the process of returning to the dust from which we came. Through wabi-sabi, we learn to embrace liver spots, rust, and frayed edges, and the march of time they represent.

    From what I can understand wabi is the imperfect perfection described in one article as the flaw in a piece of ceramic whereas the sabi is the beauty that comes with aging  - with patina. I am sure I am doing a great disservice to those who really understand this concept but it really spoke to me as I watch my body decline both due to age overlapped with the decaying from the cancer. That double word gave me a little lift like, "Hey cancer, liver spots and all: I am wabi-sabi, old enough I have a little patina on me."

    I don't know. Then sometimes, I am at the point where I do not like to look at myself in the mirror. I had my hair cut and colored today and loathe when Dustin makes me look at his handiwork in the mirror. Though I love how he styles my hair, I hate the way my face frames it. I even blurted out today, "You know. I wasn't always 54." I mean, how brilliant a statement was that? He just looked down at me with those big blue eyes and said, "Miss Sherri. You look great." Humph. Wabi-sabi to you, I thought.

    ]]>     1646 0 0 0 276 0 0     My PET Scan Man http://www.sherrifillipo.com/2015/01/29/my-pet-scan-man/ Thu, 29 Jan 2015 18:29:55 +0000 http://www.sherrifillipo.com/?p=1648 in CT laboratory

    Wednesday Morning

    Over the river and through the woods I went today for my re-scheduled PET scan. I adore "Stan, My PET Scan Man" as I call him. As much as I hate to sit in the waiting room and complete paperwork EVERY time I have a scan (do you have a port? duh any medical clips? duh do you have cancer? duh have you had any surgeries? duh). Over and over again but I do it because once I have told them the same thing for the hundredth time, my pet scan man bursts into the waiting room and asks, "Has the old man updated your ipad yet?" In front of a packed crowd, every time. Official patient identification? Forget about it. He thinks he is funny and he is, actually. A tall, big man that always gives me a bear hug when the scan is completed. When he blew through again today and  saw my mini ipad he bellowed, "Well, I'm glad he finally took my advice!" And part of me thinks he really believes I should thank him for making my Christmas present a reality! So we do our routine: we walk down the hall; he stops at the bathroom (so, as my mother says before any outing, I can 'squeeze three drops out') and then we walk down the ramp out onto the dock that takes us to the truck so I can become radioactive. Today we got stopped on our routine by the CEO out on the dock (8 degrees at noon, just sayin') while he introduced me to a new hospital leader and there PET scan man and I stood freezing but when the top guy stops and wants to chat, you chat. So when he introduced me, I said, "Yes, my husband works here; I'm doing my  part here to keep up volumes (if you are in healthcare you know exactly what I mean) and then we parted and off we went onto the truck. PET man turned to me and asked, "Why are you back so soon? What's going on?" When I told him I was considering stopping treatment but Dr. xxx wanted a scan in case I started one of the two new chemos so we would have a baseline, he just stood there and stared at me for a moment. So odd but I am getting used to my healthcare providers slipping over that healthcare worker - patient relationship and becoming friend-friend. "What?" I explained it the best I could while he jabbed me with the IV (did he stick me just a little harder this time?? :-)  We talked on but as I got on the table for the scan, he looked down at me and said, "You do know I understand but sometimes it is so hard when you get close to patients." Hmmmmm, where I have heard that before SABRINA?  Am I going to eventually scare the entire workforce away from my hospital?? We got through the scan - got back on board with our routine, those same gluten-free cookies, the bear hug and the good-bye. He put me on the truck lift and said, "I will see you soon." I said yes though I am not sure.

    Wednesday Evening

    My oncologist phoned around 6:00pm to tell me that the two liver lesions that were showing such activity have apparently been slowed down by the past two chemo treatments. One lesion is so small that they didn't assign it an uptake number (before it was 7 then up to 13 now down to ??) and the second one went from 7 to 13 down to 7.6 (7.6? how do they determine .6??) So, though I was at a birthday dinner at the time, I told her I would think and pray about it and see her next week. She pleaded with me to think about a "marked reduction" in the chemo that made me so so wiped out before. I told her I would think and pray about it.

    Thursday Afternoon

    I continue to think about it. Beloved and I have not had a chance yet to discuss it. I am leaning toward a miniscule dose to see how my body reacts all the while wondering what per cent of the original dosage is actually needed to make a difference. Do you get what I mean? And we won't know for a while. I do know if it takes the original dosage to keep everything in check, I won't be onboard with that. Again, as I have said before there is so much we do not know about this field. But then again, isn't all of life such a mystery? That's why another of my favorite verses is that "we walk by faith, not by sight."]]>     1648 0 0 0 271 0 0 272 0 0 273 0 0     Gone to Carolina http://www.sherrifillipo.com/2015/02/02/gone-to-carolina/ Mon, 02 Feb 2015 16:16:15 +0000 http://www.sherrifillipo.com/?p=1671 IMG_0002 Uncle Howard and Navy Buddy[/caption] Wow. On Friday I flew to Raleigh, NC to visit Mom and Dad, then sidekick Aunt  and cousin Anne showed up on Saturday morning we five jumped into Dad's BIG truck (Daddy said it was like driving four Miss Daisies)  and off we went to South Carolina to celebrate my great uncle's 90th birthday!   His son and family flew in from Colorado, folks from everywhere including a dear friend of his from church all landed at a restaurant, about 28 of us in all. My uncle is still quite dapper at 90 and still has a mischievous gleam in his eye.  He is the cutie pie on the left although take a look at the photo. They are both adorable don't you think?   I think if we had been contemporaries we could have gotten in a lot of trouble together! Because it is Momma Monday and I am still here in Raleigh, although I wrote this last night, she woke up this morning wanting to edit my blog (I told her to get her own blog but she quickly reminded me that my audience wanted to hear more from her!) My uncle served in WWII on the USS Hornet in the South Pacific. And though a handsome young buck, my mother says he carried a "little tiny picture" of her during his entire deployment. Think Shirley Temple. He calls me Sherri Lynn and though it is indeed my middle name, no one and I mean no one has ever called me that except him. And to be frank, I don't think I would let anyone else call me that! He has been a widower for many years, still lives on a golf course and see friends regularly. And every few weeks, he will call. I can never remember the area code but as soon as I say hello, he will say, "Sherri Lynn? This is your Uncle Howard." And we gibber jabber for about a half hour. At the party Saturday, night, my cousin had made a family favorite cake, mocha, that my great grandmother used to make! (I think it must have been exotic back in the day, don't you?) And my mom had a red, white and blue, sheet cake made with the above picture of him with his Navy buddy smiling broadly at the camera both with their lives ahead of them. You should have seen him smile when he saw that picture. Though it took him a while, he came up with the name of his WWII buddy. We 'googled' him but to no one's surprise he was no longer with us. The private dining room held another party of about the same size. We couldn't tell what the occasion was as there were no balloons, nothing to denote anything special though they seemed to be happy to be there. When it was time to have our cake and to sing Happy Birthday, we went over to their section, interrupted their dinner and asked if they would join us in a song to our uncle. They more than obliged and I bet 50+ people belted out the song. Uncle Howard stood there hardly able to take it all in. When Mom showed the other party  the 'military cake' everyone clapped and an older gentleman in the back stood up, saluted my uncle and said, "Thank you for your service sir." It was absolutely magical. Momma is sitting behind me as  I write. She says I put too many 'ands' in my writing and if I were in the third grade and living in NC and it was time to take the standardized test and it was time to take it today, I would fail. Good thing for many reasons I don't live in NC and can choose if and when I come to visit.   Addendum: Besides my affinity for too many ands, she just asked me if I knew to place two spaces after a sentence...............................  ]]> 1671 0 0 0 277 0 0 278 277 1 279 278 0 280 0 0 281 0 0 282 0 0 283 0 0 285 283 1 286 282 1 Miscellaneous Ramblings From North Carolina http://www.sherrifillipo.com/2015/02/03/miscellaneous-ramblings-from-north-carolina/ Tue, 03 Feb 2015 16:19:23 +0000 http://www.sherrifillipo.com/?p=1685 Nests on the leaf.

    Today is my last day in NC.  Mom and I have binge-watched Mad Men while I have been here. I wanted to get her 'addicted' to it as she was to Breaking Bad.  I think I have succeeded.  She now has me obsessed with making sure I double space after a sentence.  If you notice I have not been doing it, please forgive me and look the other way...remember when I told you we have many similarities?  Well, as I have walked around her house the past two days, I keep shaking my head. Like my apartment, she has bird nests everywhere. I forgot she finds them as fascinating as I do. I mean real nests, not from a store.  I had to convince Beloved a couple of years ago that we wouldn't get any bird borne diseases. So, far so good - unless they cause breast cancer and in that case no wonder I got a double dose.  Ha. I don't think I like double spacing. When I read Friday's blog to my mom, aunt and cousin - the one about wabi-sabi, I had just started reading when my mom piped up, "Oh! Wabi-sabi. I have that on my  Pintrest account." Of course you do, I thought and kept reading but my aunt and cousin kept saying, "Wabi who?  I though that was the hot green stuff you put on sushi..." But Momma kept saying, "Oh no! It's all about the beauty in the world....life cycles...beauty in the wear and tear of life......." Of course she knew all about it. Why would I be surprised? After her backseat editing from yesterday's blog I invited her to be a "user" which in the blog world could give her writing/editorial rights to my blog. I told her Mondays could be hers and hers alone to write about whatever her heart desired.  No, she wouldn't take me up on that. Not sure why as she did a splendid job of sitting behind me today and being my 3rd grade writing teacher! We have had a good time. She is a good sport about so many things. Nothing gets her too upset - well some things do but I will restrain myself from revealing them lest I get her started. On a final note, I have been asking to have a hedgehog for a pet. Really. I think they are the cutest things in the world. They are quite prolific in my sister-in-law's country of Belgium. I want her to bring one back. I was happy to discover that Mom didn't know how cute and popular they are. She really didn't believe it until she had confirmed it with Pintrest!  ]]>     1685 0 0 0 284 0 0     Hidden Magic Everywhere http://www.sherrifillipo.com/2015/02/04/hidden-magic-everywhere/ Wed, 04 Feb 2015 16:29:10 +0000 http://www.sherrifillipo.com/?p=1694 Adorable little boy, blowing snowflakes outside in a snowy day

    What a day I had yesterday, my last day in NC and then an evening flight back to 9 degrees and 10 inches of snow on the ground. I am convinced as I continue to look around that there are amazing things all around me (us) in the most unsuspected places. I wish I had learned that sooner in life. Last night I was on the shuttle bus in Philly going from one of the large terminals to Terminal F where all the small commuter planes fly out of taking us to small places further north and into towns tucked in the hills of NY, PA and beyond. I was sitting on the bus when an elderly woman sat down beside me. She noticed I was playing Words with Friends and asked me what that game was. When I told her, she said she would have to look that one up. She then started really talking. (And mind you this is at most a 5-10 ride across the tarmac). Come to find out, she worked for the Census Bureau for many years and somehow was in charge of listing/keeping track of the streets in the United States. A large and commanding woman she looked down at me over her glasses and said, "Would you live on Psycho Place?" I thought, "No, not if I want to keep flying I wouldn't." Yes, she said that it exists out in Arizona I think she told me. "How about Toxic Waste Dump Road? I am not kidding. And she named the state where that unfortunate neighborhood lives and I suppose tries to rise above it. I asked if she could imagine trying to sell property listed at that address and she just chuckled. She then said, "I have one more for you. And it's subtle. The name of the street is Every Road. Doesn't sound like much does it until you give someone directions. It apparently is off a highway - I will just make the number up. So, once you exit Highway 15, turn left on Every Road." And she laughed and laughed. After I gotten an education from her I found my gate and waited a half hour. Then a young woman with a one year old and three-year old, a stroller and three pieces of soft luggage walked up. I looked over at her and wondered how in the world she was going to manage to handle all of that. By this time it was 8:30pm and I just looked at her. That stroller was bigger than my first car. And she was a petite little thing. I walked over to her and asked if  I could help her get everything on the plane and she seemed grateful (how could you not be?) Come to find out they had been travelling from San Francisco all day. I wanted to collapse just from the sound of it. We struck up a conversation. She grew up in the town next to Corning but they have been on the west coast for quite a while. Her husband is being considered for a position in Corning and she had come home to visit family and see if a move back might work. I asked her if her boys had ever seen snow. She thought the older one had but wouldn't remember it and the younger one definitely had not. We all got on the plane and while waiting, the little boy started talking to the moon. "Come on down here Godzilla where I can see you good. Move your head in the moon and come on down here. Godzilla, do you hear me? Move your head so I get to you." With an adorable lisp, he continued to talk to the moon; everyone on the plane was laughing so hard we were crying. When the plan started taxiing, he said, "Now you're moving your head. I am going to get you." When we deplaned in Elmira, the older boy held my hand while Momma wrestled with the younger boy and the stroller. I looked down at the boy and his eyes were chocolate saucers. He was staring at the snow piled up around the tarmac. His mother says he calls snow "white sand" so we went over to a clean pile and I scooped up some and asked him if he wanted to touch it. He held out his little hand and was startled by the sensation. He looked up at me, mouth agape. They walked in the terminal and found her parents. I walked in and found my Beloved. He took me home and though exhausted, I sat down and thought how could I have imagined meeting the people that I did and being given the honor of placing the first snowball into the hands of a child?  ]]>     1694 0 0 0     When It Comes to Breast Cancer, Hope and Pink Ribbons Are Not A Strategy For Cure http://www.sherrifillipo.com/2015/02/05/when-it-comes-to-breast-cancer-hope-and-pink-ribbons-are-not-a-strategy-for-cure/ Thu, 05 Feb 2015 11:12:08 +0000 http://www.sherrifillipo.com/?p=1701 The article below was published in USA Today on Tuesday. The title of the article? Breast cancer deaths drop dramatically over 20 years If you have been following along with me over the past few months, you will know that what you read below is not completely accurate. Sadly for the 155,000 in the US living with metastatic cancer, it grieves us so to see a national publication send this across the nation when so much of it is skewed. In this article you will read:   Article: Early detection saves lives and mammograms are one of the leading reasons in this decline. My response:  Not necessarily true; mammograms cannot tell us which breast cancers will need treatment no matter how early or how often you receive a mammogram; Remember what Dr. Susan Love, surgeon and breast cancer expert said about mammograms recently? "Mammography is capable of finding about 26% of cancers at a point where it makes a life-saving difference in the outcome, it also finds many lesions which would never have gone on to be life-threatening and others which will still be life-threatening in spite of early detection and rigorous screening."   Article: Women are celebrating living longer. My response: Maybe they did not have metastatic disease and were never going to die from it to begin with; but  44,000 will die every year from this disease.   Article: There is a lot of anecdotal 'evidence' of survivorship. My response:  When you read articles or books you will note a lot of individual storytelling of people living longer lives; the median length of survivorship of someone with metastatic disease is still three years and that hasn't moved significantly in decades.   Article: One reason that for the decrease is that we, as women, are "paying more attention to our bodies."   My response:  I paid great attention to my body and never missed a mammogram and I am dying from this disease. Do you see how crazy articles can be?   Article: We are told in the article to view the long-term, downward trend "optimistically and with hope from the day they hear, 'You have breast cancer.' " My response: You can hope all you want but it is not a strategy or an immunization against what is going on inside your body.  You may have a disease that is localized inside your breast and therefore you will NOT die from breast cancer. If your cancer starts to travel and it lands in the most common organs: liver, lungs, bone, brain you WILL die from the disease. Remember only 7% of the 15 billion dollars allocated for breast cancer research over the last decade has gone toward finding a cure for those of us in which the disease has  spread. No amount of hope or pink ribbons is going to determine why my cancer flew on to my liver and is microscopically circulating in my body waiting to attack another organ.     From USA Today: Breast cancer deaths have dropped dramatically in the past two decades — the result of better treatment, greater awareness and more women getting mammograms. The latest government statistics show deaths declined 34% between 1990 and 2011, from 33 to 22 per 100,000 women, and experts expect that the downward trend has continued in the four years since. The American Cancer Society says this translates into more than 200,000 deaths averted.
     
    Megan Schanie is among the growing ranks of survivors. After a breast cancer diagnosis in 2006, Schanie feared she might not live to see her two children grow up. But on Sunday, she celebrated her youngest daughter's 10th birthday.
    "It's fantastic," says Schanie, 39, who helped start a support group for young breast cancer survivors in her hometown of Louisville. "Even in my own little world, I've noticed that we have so many in our group who are surviving."
    Otis Brawley, chief medical officer for the cancer society, which is marking World Cancer Day on Wednesday, says the biggest reason is that treatments have improved, with new medicines such as targeted chemotherapy and the estrogen blocker Tamoxifen.
    Meanwhile, Brawley says, awareness of the disease has risen steadily, and women now go to their doctors when something seems awry. Mammogram screenings are the third-most-important reason for the decline in deaths, he says; mammography rates among U.S. women 40 and older have risen from 29% in 1987 to 67% in the 2005-10 period. "In the 1990s, there was this huge push to screen women with mammography, to reach women who didn't have access," says Thomas Tucker, director of the Kentucky Cancer Registry.

    Mayo Clinic plans trials for breast cancer vaccine

     Cancer society statistics show mammography rates have leveled off in recent years, dropping slightly from 70% in 2000. Complicating matters, there are currently two different, high-profile recommendations regarding mammograms: The cancer society endorses yearly screening starting at age 40, while the U.S. Preventive Services Task Force advises screening every two years for women ages 50-74.
    Breast cancer experts say they aren't sure how these conflicting recommendations will affect death rates. But they expect continuing advances in breast cancer treatment. Susan Brown, managing director of health and mission program education for Susan G. Komen, the breast cancer organization, says there's a trend toward more targeted, individualized therapies as scientists learn more about the biology of tumors. And treatments will get only more personalized in the future, she says.
    Schanie says she appreciates such advances. She's also glad breast cancer is no longer shrouded in secrecy as it was in decades past, and that women are paying more attention to their bodies than ever before. In her case, she woke one morning to find her right breast swollen, with a hardened area, and a biopsy confirmed cancer. She had a double mastectomy and chemotherapy and later took Tamoxifen pills and underwent breast reconstruction. She's had no signs of cancer since. Going forward, Brawley says the breast cancer death rate may not keep dropping as quickly as it has, partly because some of the most difficult-to-treat types of cancer remain. Still, he says, "I'm very hopeful we'll continue to have a decline." Brown says women should view the long-term, downward trend "optimistically and with hope from the day they hear, 'You have breast cancer.' "]]>     1701 0 0 0     One Doesn't Have To Be Old To Fall: Just Ask Me Or Atul Gawande http://www.sherrifillipo.com/2015/02/06/one-doesnt-have-to-be-old-to-fall-just-ask-me-or-atul-gawande/ Fri, 06 Feb 2015 16:02:21 +0000 http://www.sherrifillipo.com/?p=1719 Mardi gras maskLast Night I was having a pretty uneventful day yesterday. Beloved was out of town on business. It was cold and I was still recuperating from all of my family festivities when I called Mom last evening to talk. We chatted about the party, about a recipe she had sent me and then I told her I had been reading the book that both she and a family friend had recommended by Atul Gawande,  On Being Mortal: Medicine and What Matters in the End. I was waxing on about how the book, for the most part, seemed to be written for older people who were staring down the barrel of old age, nursing homes etc. not for younger and middle-aged people like me who had diseases that would not get us to that point. Mom and I were talking back and forth about it, she didn't necessarily agree with me. I then told her I had no idea what I would write about for Friday's blog and asked her to say something funny so I would have some fodder to write about. She politely declined.  We continued to talk on a few minutes  and then hung up. I padded around in my pajamas, watched the news. Beloved called and checked in. I watched a little more television until I was ready to call it a day. I don't do this when Beloved is here but when I am alone, I have a few OCD tendencies and I went to check on the patio door. Mind you that we live on the top floor and only my neighbor who has a terrace up there as well could get to me and why should she want to? She left me cupcakes yesterday by the door, hoping that I was weathering this cold weather. There is also a foot of snow on the terrace that all but covers all the furniture leaving them looking like large white mounds. Who could or would want to get me?  But nevertheless I climbed three little steps to check the lock and fell face forward on to a wicker box that we keep the cat food in and then face down on the floor. I saw stars like I have never seen in the sky, stood up and realized I had cut my upper eyelid.

    After the Fall

    When the thin blood started to pour (chemo changes everything) it looked like I had made some strange sacrifice out on the terrace. It was enough that I suddenly felt old, vulnerable, scared and alone.  I thought about the book that I  had just poo-pooed a couple of hours ago and thought, "Serves you right, you little smarty pants." I called the first person I could think of - that "brother" of mine that I have spoken about before. Though he teases me mercilessly (he might tell you that that street runs both ways) he picked up the phone quickly and thought I had called to rib him about something. When he heard me crying and when I could get out that Beloved was not here, I heard him say he was on his way and the phone clicked. He arrived within minutes bearing surgical scissors, steri-strips, and flashlight. No joking around. He got right to work. He cleaned my wound as gently as any nurse, did an assessment on me. Did I ever tell you he is a physician? He doesn't want to be named here either so I will call him Little Brother. He checked my pupils, compared one side of my face to the other, told me it looked a little swollen and applied the steri-strips. He then told me to sit up for a while and keep a cold compress on my eye. Then the little brother kicked in. We have a Valentine's Ball to attend Saturday night, a fundraiser for our local hospital. The theme this year is Mardi Gras. As he was walking out after making sure I was ok, he suggested I might want to find a masquerade  mask for the evening so I could hide my swollen eye. Ha. Ha.

    This Morning

    This morning I woke up and texted him to tell him I was alright and to  thank him for coming out in 0 degree weather. Simultaneously, he was emailing me with this message: How are you today? Along with this picture:

    phantom

    I TOLD you he was a brat! :-)]]>     1719 0 0 0 287 0 0 288 287 1 289 0 0 290 0 0     Falling: It's Not Just For the Elderly Anymore! http://www.sherrifillipo.com/2015/02/09/falling-its-not-just-for-the-elderly-anymore/ Mon, 09 Feb 2015 14:44:11 +0000 http://www.sherrifillipo.com/?p=1732 People in the form of a man falling.I am doing fine after my Thursday night trip up the steps. I am sporting a bit of magenta around the eye and a heavy eyelid but nothing that time won't heal - unlike other things going on in my body. I ended up not needing a masquerade mask Saturday evening. By the  time I should have been trying to either camouflage the black eye or somehow coordinate the eye shadow with my non-black eye, I just didn't think I could go out to the ball. Beloved still quite sick (and he NEVER gets sick) between the two of us, we would have brought the mood down at our table so we just stayed in.

    This topic may bore you to tears unless you work in healthcare or can appreciate that falling could happen to anyone. What I am trying to say again is that one's risk for falling is not limited to those in nursing homes. There are many people out there in the world who have actually dedicated their lives to understanding the causation of falls, the most noted person from the Yale School of Public Health, Dr. Mary Tinetti. An excellent resource for anyone is her Fall Prevention website:  http://www.fallprevention.org/pages/abs_art.htm Every hospital in America has what is called a "falls program" with a committee of various members whose goal it is to reduce the number of falls with injury. And as I have moved through now four very different hospital organizations in my career,  I have been a part of falls teams on each and it amazes me how little many healthcare givers understand about falls and risk reduction. In Atul Gawande's latest book that I referenced on Friday, Being Mortal: Medicine and What Matters in the End,  he states the three primary risk factors for falling:
    1. poor balance
    2. taking more than four prescriptions
    3. muscle weakness
    He states that elderly people without these risk factors have a 12% chance of falling in a year. Those with all three risk factors have almost a 100% chance. I will expand on what he has written and remind those of you who do not know me that I am middle-aged, not elderly and I have all three risk factors and guess what? Down I went. And regretfully, it was not the first time and scarily probably won't be my last. [pullquote]Elderly people without these risk factors have a 12% chance of falling in a year. Those with all three risk factors have almost a 100% chance.[/pullquote] If you are reading this and you wonder what it has got to do with you, it may not have anything to do with you. But what about your parents? Older siblings? If you are in healthcare, it definitely means everything to you even if you are not caring for the elderly. How so?  Once an individual enters the doors of a hospital, it is my opinion and those of many others they all become fall risks. Why?
    • Patients are placed in unfamiliar settings (a hospital room or exam room)
    • At night, they are less likely to remember they are not at home and get disoriented
    • Hospitals may or may not have night lights in the rooms or bathrooms; unlit, unfamiliar surroundings and down they go
    • Patients are likely given medications that they were not taking at home or adding medications to their home regimen; see Gawande's #2 risk factor above.
    • Patients will likely be under increased stress from being in the hospital and/or there without family and friends. They may attempt to try and do more independently (toileting, getting a shower, leaning over and getting water) and fall out of the bed or a chair.
    • Hospitals may believe they provide hourly rounding for their patients but I have found time and time again that many healthcare leaders don't really even know what constitutes the make-up of an hourly round
    I know I am on a soap box (and I will be careful when I step down!)  but I think everyone needs to take an updated perspective on falls and falling. Young and old alike, based on what we are doing, where we have been, it can all add up to a trip and a fall in a heartbeat. If I weren't so vain, I would take a selfie and show you what three small steps did to me!  ]]>     1732 0 0 0 291 http://gravatar.com/buddyriley 0 0 292 0 0 293 0 0 294 0 0 295 0 0 298 0 0     Help Before You Fall http://www.sherrifillipo.com/2015/02/10/help-before-you-fall/ Tue, 10 Feb 2015 12:44:36 +0000 http://www.sherrifillipo.com/?p=1749 Close-up of a Crossbreed, 4 years old, with glasses falling of its head in front of white background

    I should have known but it still caught me off guard, the number of you all who texted, emailed or commented here on the blog about the many various ways you have fallen in the past - including some very recent incidents! Falls are much more common than we would like to believe. Though I had no intention of writing once about the topic never mind a third time, I thought I would end this topic with giving you some preventions that you could check off at your home and/or the home of your loved ones.  In Dr. Tinetti's website on falls prevention, she lists the most common causes of falls. I have indicated them below with my ideas for prevention (with all due apology to Dr. Tinetti who may or may not agree with me and probably has many more that I have never thought of):

    The common health problems for falling are:

    1. Problems walking or moving around
      1. Do you have difficulty when you go shopping? Can you navigate through stores?
      2. Do you have difficulty walking if you have to park far away from the store? Do you need to apply for a handicapped parking sticker?
    2. Four or more medications
      1. If you see more than one physician, does each caregiver know what you are taking, in totality?
      2. If you go to the Emergency Room or are admitted, do you know everything you are taking? Do you have a list and can you provide it to your caregiver?
      3. You will hear the term "medication reconciliation" spoken in hospitals and doctors' offices and that is the nearly impossible task of keeping up with your meds, any changes in dosages, any new or discontinued items. While so important, we as a nation have realized how awesomely difficult the task is - can  you/your family member help the caregiver by providing updated information every time you are seen? There a lots of templates online that you can complete and take with you.
    3. Foot problems, unsafe footwear
      1. That would be me last week. I was wearing scuffs, no backing on my shoe and a little worn, enough that I did a slide up the steps.
      2. If you have diabetes, you know your fingers and toes can and do go numb, known as neuropathy, this is a definite factor in trips and falls. Your feet have decreased sensation and if not careful, you could be headed downward; and not just diabetes, chemotherapeutic agents can cause the same numbing.
      3. Untied shoes, tripping on laces
      4. Shoes that simply don't fit.
      5. High heels, clogs, think of what we put our feet through and expect them to get us from here to there without incident!
    4. Blood pressure drops too much on standing up/dizzy
      1. Link this problem with #2 and you can see how medications (or polypharmacy as it is called in healthcare) can be overwhelmingly causative of falls; if your healthcare providers don't know what you are taking, the mixing of medications can cause all kinds of untoward side effects, blood pressure drops being just one
    5. Problems with seeing
      1. Sounds pretty obvious but if you wear glasses, when was the last time you had your eyes checked?
      2. Is your driveway well lit not only for you but for guests?
      3. How about your porch? Is the light working? Is it bright enough? Basement lights working?
      4. Do you have handrails outside at your steps? How about sturdy handrails going down to your basement?
      5. Silly, but is your hair in your eyes? Do you need a haircut?
      6. Do you have nightlights throughout your home? If you are a night time snacker, is your pathway lit for your late night feasts?
    6. Tripping hazards in your home
      1. Do you need to rearrange furniture to allow better maneuvering through your living space?
      2. Are there too many items on the floor (decorative or otherwise) that could cause you to trip?
      3. Do you have a pet or two who may circle through your feet and potentially cause you to stumble?
      4. Do you have slick magazines lying around waiting on you to slide on them?
      5. Are spills from humans or pets cleaned up as soon as they happen?
    I think you have gotten the point. For those who are caring for or who are checking in on older loved ones, you may get their attention and assistance with these hints above if they know that for those over 70, 16% of all Emergency Department visits are due to falls and fall-related injuries. Keeping healthy is difficult enough; some things are just not within our control to change (like cancer!); others we can at least help mitigate. I hope you find this helpful. Mom says it's time for less technical stuff. I will see what I can do for tomorrow.  ]]>     1749 0 0 0 296 0 0 297 0 0 299 0 0     A Chance Encounter With A Purple Horse: Happy Anniversary Mom & Dad http://www.sherrifillipo.com/2015/02/11/a-chance-encounter-with-a-purple-horse-happy-anniversary-mom-dad/ Wed, 11 Feb 2015 14:52:26 +0000 http://www.sherrifillipo.com/?p=1760 horse

    My mother left me a message last night saying she had meant to call earlier  but had gotten tied up with running errands all day. Then she reminded me that it was her wedding anniversary and that they were staying in and dining on shrimp cocktail...I suddenly had a flashback from a year or so ago. We were at a family gathering and had walked out onto the sidewalk (Mom, Dad and I). Mom, in usual fashion, had left something back in the restaurant and we waited while she retrieved whatever it was. Dad was slowly headed back her way when I stopped in the entryway of an art gallery and was looking at a rather large painting of a purple horse. Yes, I know what you are thinking and no I was not drunk. It really was a very large painting.  I looked up and a homeless man who was farther along in his liquid celebration than I, looked at me and asked, "What is that thing?" I stood there thinking, "Oh this is going to go over so well.....It's a purple horse." "No it ain't," he bellowed! "Don't you know a raging bull when you see one?" Never one to argue with a drunk person, I acquiesced but he could tell I was just pandering. "Cain't you see his raging nose? His horns? Don't you see it?" At just that moment Mom and Dad walked up, looked over at the two of us, smiled and kept walking. The homeless fellow yelled out to Mom, "Hey! Don't be mad at your husband. Come on. Forgive him. Fifty years of marriage. You gotta forgive him" And the two of us started following them. We passed by two young men who were seated at a table outside and I heard one of them say, "Oh this is going to get interesting." But those guys didn't  budge. As the fellow and I walked behind Mom and Dad my new friend remarked, "Andy and Aunt Bea. Don't they make the loveliest couple?" "Couple?" I said loudly enough for Mom and Dad to hear me. "Fifty years? Those two old hippies finally made me legitimate last year."  I thought my new homeless friend was going to have to sit down on the sidewalk to compose himself he laughed so hard. We finally stopped at an intersection and he got in front of Mom and Dad, made his hands into L-shapes to mimic a television screen and said, "Andy and Aunt Bea...Aunt Bea and Andy...a fine couple" and out he walked into traffic until Mom pulled him back on the curb. The light changed at that moment. We walked straight ahead and he turned right, walking down the street, shaking his head and laughing, "What a cute couple."]]>     1760 0 0 0 300 0 0 301 0 0 302 300 1 303 301 1 304 0 0     The Conversation http://www.sherrifillipo.com/2015/02/12/the-conversation/ Thu, 12 Feb 2015 15:14:23 +0000 http://www.sherrifillipo.com/?p=1770 angel 1

    If you were to ask me what is the most difficult thing I deal with, I would tell you it is letting me talk about death and dying - what I do and do not want to occur both on this side of life and what I want you to do when I am on the other. If you know me, you know that I couch a lot of things in the cloak of humor because as they say, "just a spoon full of sugar helps the medicine go down.." and it's true.  In a very southern way when I say something to my mother and it creeps up on the edge of death, she will say, "if you don't shut up, I am going to smack you." Don't be alarmed. That is a very  southern thing to say, no matter how old the child is. But it is her way of saying, "I can't talk about that or I don't want to talk about that or talk to someone else about that..." And I get it. I really do. I was perusing through the New York Times this morning and came upon one of their "most emailed stories." If you don't read the NYT, every day they will list the top ten stories at the moment that readers are emailing to family and friends. The topics vary widely and I do get a kick of what is making the rounds. It could be anything from Obamacare to some strange recipe for artichokes. You never know. But one of the top stories today was about a woman who had recently died and the title of the article was Seeking a Beautiful Death by Jane Brody. In it, the author quotes Dr. Angelo E. Volandes,  author of a new book, The Conversation. A lot like the book I have been quoting by Atul Gawande (Being Mortal) the author says as Americans we have access to the best medical care in the world yet we often die some of the worst deaths in the world. Why?  Because we do not  have the "conversation" that would outline what we do and do not want at the end of our lives. I am not talking about those of us with terminal illnesses. I mean, as do these authors, all of us whether young or old, sick or well. The list of questions that Dr. Volandes made (and that Ms. Brody used in her article)  is so spot-on that I don't need to add anything to it. The questions are vital for everyone to have answers to:
    • What gives your life meaning and joy?
    • What are your biggest fears and concerns?
    • What are you looking forward to?
    • What goals are most important to you now?
    • What trade-offs or sacrifices are you willing to make to achieve those goals?
    Make sure that you, as the future patient, have answers to these questions AND that you have shared them with someone who will be making decisions on your behalf. Having this information locked inside your heart is going to do no one any good if you have not shared it with family or friends. And all of this leads me back to my chemotherapy decision. I had my last PET scan a couple of weeks ago if you remember. And the liver spots had shown a decrease in activity. I was supposed to have been back to my oncologist  by now but had to reschedule my appointment. I am planning to see her today, Thursday, to discuss future treatment. I have decided I do not want to try either of the two chemos that she suggested to me when I had such a bad reaction to the Kadcyla. I am, however, going to accept a markedly reduced dosage and determine how I feel afterward. My family knows of this decision. I am not sure how they feel about it but they accept it and stand behind me while we see what happens. We all understand that they might not make the same decision, but they understand that it is the decision I need to make for me.  ]]>     1770 0 0 0 305 0 0 306 0 1 312 0 0     Football and Copperheads http://www.sherrifillipo.com/2015/02/13/football-and-copperheads/ Fri, 13 Feb 2015 15:45:05 +0000 http://www.sherrifillipo.com/?p=1790 copper head So Mom called after the "purple horse" story to relive that crazy evening. Although I am accused of hyperbole, that story was exactly the way that it happened. I mean, who could have made that up? As we talked along, she told me it was a beautiful day in NC and it was time she went out to "pull a few weeds." While other women go and get pedicures to relax, Mom likes to go out and rip up stuff out of the ground. Though I have told you of the many ways we are similar, we are NOT similar when it comes to getting crud under our nails. When I asked her why in February she needed to go out yet again and pull stuff up, she answered, "Because right now the little snakes are asleep. If I wait until spring, they will be awake and might try to bite me."

    Which reminded me of a story from last year. Mom had been out yet again in the winter doing whatever she does out there and came upon a copperhead who I guess had forgotten to turn his clock back and was wide awake apparently looking for a fight. Well, when Mom doesn't have a chainsaw in her hand, she usually has a shovel. And good thing she did that day.  While Pop was deep into a football game siting on the sofa, Mom was out in the front yard decapitating a copperhead with her sturdy shovel. Never one to make a big deal out of killing snakes, she pushed it aside and kept working. Later that afternoon, she came inside, Pop was well into another game and she said, "Jim I killed a copperhead a while ago in the yard." And if you love football or know someone who does, you learn you do not talk to the football fan and if you expect conversation, it usually  sounds like cavemen grunts unless you ask them during halftime. It wasn't halftime and apparently Dad grunted. Mom, still being very new to this marriage thing didn't think that was reverence enough for what she had gone and done to keep home and hearth safe. So she went outside, scooped up the beheaded snake and served it to him on a shovel in the family room. I am not privy to what he said, but I understand she got both his attention and his respect!]]>     1790 0 0 0 311 0 0 314 0 0 315 0 0     Treatment Update http://www.sherrifillipo.com/2015/02/12/treatment-update/ Fri, 13 Feb 2015 00:26:31 +0000 http://www.sherrifillipo.com/?p=1798 bomb

    I just got home from seeing my oncologist. Due to a couple of scheduling mix-ups, it had been several weeks as you know since I had been to see her. I heard through the nurse grapevine that everyone thought I had ditched the whole thing and had gone off to I am not sure where! A great story but obviously not true. After showing my physician my black eye, we talked chemo. I swear to you that she got a little misty-eyed when I told her I was willing to try the lowered dose Kadcyla - - once! And then to see how I reacted. So that's what I did. I am back home. I've had dinner, scratched the cats and am sitting here feeling like there is a ticking time bomb in my belly. Not really...]]>     1798 0 0 0 307 0 0 308 0 0 309 http://gravatar.com/sherrifillipo 307 0 310 http://gravatar.com/sherrifillipo 308 0 313 0 0     Valentine Weekend http://www.sherrifillipo.com/2015/02/16/valentine-weekend/ Mon, 16 Feb 2015 16:20:12 +0000 http://www.sherrifillipo.com/?p=1807 snowsherri

     We had a great time, eating and drinking. The snow kept coming. Finally we parted ways and walked home. We always have a great time when we are together. Many of you know I have been begging for a hedgehog for quite awhile. Half way serious and half way to get beloved's goat. He could think of nothing worse than having to deal with another mouth to feed and box to clean. So for one of my Valentine gifts, he gave me a hedgehog:

    hedgehog (2)

      He found it rummaging through one of the antique stores on Market Street. I was able to love it for all of one day. Let me tell you what chemo does. Before we went out for drinks, I photographed it to send to Mom. We came back and the darn thing was gone. I looked all over the apartment Sunday and cannot find him. I mean everywhere - freezer, pockets, drawers, boxes...what on earth did I do with it? It is tiny, could sit in your hand but for heaven sake, I thought I photographed it and then I THOUGHT I set it down on the kitchen counter... If you find him, would you send him home?]]>     1807 0 0 0 316 0 0 317 316 1 318 0 0 319 318 1     What I Need to Remember http://www.sherrifillipo.com/2015/02/17/what-i-need-to-remember/ Tue, 17 Feb 2015 15:59:59 +0000 http://www.sherrifillipo.com/?p=1818 old stone cross

    Yesterday's devotional from the book I have recommended in the past, Jesus Calling, really spoke to me. Here is the first paragraph:
    Thank me for the conditions that are requiring you to be still. Do not spoil these quiet hours by wishing them away, waiting impatiently to be active again. Some of the greatest works in My kingdom have been done from sick beds and prison cells...Do not despise these simple ways [quietness and trust] of serving Me. Although you feel cut off from the activity of the world, your quiet trust makes a powerful statement in spiritual realms.
    I had to read it over and over again. Some days I wake up and I've "got it" meaning I understand that my purpose in life has shifted and I am having to do more on the sidelines. Other days to be honest, I miss my suits, folders, meeting agendas  and former purpose for being. This devotional pulled me back - got my attention. I have to remember just as I am no longer 24, 34, or 44, I am no longer a hospital nurse, no longer director of projects, doer of things. I am now a sitter and reflector. A pray-er for family, friends and sometimes strangers. I need to remember to bend and be flexible and change as God asks me to. Well, I've gone and caught Beloved's chest cold. That's the way it is when you are immunocompromised. If not careful, you will pick up all kinds of bugs. Even when you are careful. Your body simply isn't as strong as it once was. So, I will close for today and allow post-chemo and gunky cold to allow me to sit and further ponder this devotion. The irony of the timing isn't lost on me.  ]]>     1818 0 0 0 320 0 0     Lorena Rojas and Shirley Temple Black: Two Different Breast Cancers http://www.sherrifillipo.com/2015/02/19/lorena-rojas-and-shirley-temple-black-two-different-breast-cancers/ Thu, 19 Feb 2015 14:39:25 +0000 http://www.sherrifillipo.com/?p=1829 lorena rojas  Lorena Rojas, a soap opera actress, died on Monday at the age of 44 from metastatic breast cancer according to the New York Times. She was originally diagnosed in 2008. After she learned of her disease, she made it her mission to reach out to the Latino communities to educate them about breast cancer. She was well known in Mexico and internationally on Spanish-speaking television. Born: 1974 Breast cancer diagnosis: 2008 Metastatic Breast Cancer Diagnosis: 2013  Died: 2015   She was 44.       handprints in Hollywood Boulevard in the concrete of Chinese TheShirley Temple Black should have been credited for bringing the topic of breast cancer out into the open although I along with just about everyone else credits Betty Ford with that distinction. In the New York Times, there was a very nice section on notable deaths of 2014 and as I was looking through them I read the article about how Shirley Temple Black turned the medical world on its ear by refusing what at the time was the standard procedure for a breast biopsy. If the biopsy was determined to be malignant, while still under anesthesia, the surgeon would remove the breast. According to the NYT, she would have nothing to do with that process. I loved her quote, "I find intellectually distasteful the prospect of waking up and finding that someone else had made a decision and taken action in which I, lying quite inert on the operating table, had had no voice." Wow! I wish I had said that! Later on in the article note this:
    Betty Ford is often credited with breaking that public silence. But Black beat her to it by two years. What’s more, while Ford’s revelation may have been extraordinary, her response to her illness was not. When an early patient activist, for instance, begged her to legitimize the two-step procedure by undergoing it herself, the first lady refused, explaining, through an intermediary, “The president has made his decision.” As for Black, the American Cancer Society scolded her for her defiance, fearing that other women might follow her lead, demanding input into their treatment and questioning their doctors’ authority. They did and still do today.
    Unlike Lorena Rojas, Shirley Temple Black did not die from breast cancer. She died from chronic obstructive pulmonary disease (COPD). Born: 1928  Breast cancer diagnosis: 1972  Died: 2014    She was 86.  ]]>     1829 0 0 0     Market Street http://www.sherrifillipo.com/2015/02/18/market-street/ Wed, 18 Feb 2015 21:54:29 +0000 http://www.sherrifillipo.com/?p=1838 http://www.huffingtonpost.com/f-kaid-benfield/in-praise-of-the-great-am_b_5394344.html  ]]> 1838 0 0 0 321 0 0 A Response from the Metastatic Breast Cancer Network I Did Not Expect http://www.sherrifillipo.com/2015/02/20/a-response-from-the-metastatic-breast-cancer-network-i-did-not-expect/ Fri, 20 Feb 2015 15:04:43 +0000 http://www.sherrifillipo.com/?p=1843 head in the sand

    Last week I submitted my blog The Conversation to the Metastatic Breast Cancer Network (MBCN) in hope that they might think it worthy to disseminate throughout its members as they did with my Joan Lunden blog from several months back. If you will recall, in this most recent blog, I wrote about how important it was to have conversations with healthcare providers, family and friends about one's desires at the end of life - things  one wanted done as much as those things one would not want done in the end.  I made a point of writing that this conversation was for the ill and the well.  I was not expecting the response I received and I am still ruminating (this is most of the response but not all):
    End of life is so important for all of us, but, as you say, it is one of the most difficult things to deal with. At MBCN we do not have anything on our website about end of life. This was a conscious decision made when the organization was founded in 2004. At that time, metastatic breast cancer was viewed only as an immediate death sentence and we have worked hard to overcome that narrow view and emphasize people living with metastatic disease and seeking more and better treatments to make mbc a chronic disease.
    Now that we are in 2015, we believe that attitudes towards mbc are changing. It is not viewed strictly and automatically as preparing for death as your only and main option. Therefore, we are thinking of adding a section to the website to address the issue and we will certainly include some of the links you have mentioned.
    While I suppose I can see their point in 2004 but ten years later they still don't address death on their website?
    Am I the only one scratching my head on this one?
    I am dumbfounded.
    ]]>     1843 0 0 0 322 0 0 323 0 0 324 322 1 325 323 1 326 0 0 327 0 1 328 http://mbcnbuzz.wordpress.com 327 0 329 328 1 331 http://www.mylifeline.org/stephaniesugars/updates 0 0 332 0 0     Weekend Update: MBCN Responds To Conversation Blog http://www.sherrifillipo.com/2015/02/21/weekend-update-mbcn-responds-to-conversation-blog/ Sat, 21 Feb 2015 19:01:50 +0000 http://www.sherrifillipo.com/?p=1858 Detailed sandpiper After I posted yesterday's blog, I continued to ruminate and I began to wonder if I could be off-base. I also am a member of Inspire an umbrella group made up of  different health communities. One can sign up and join any of a number of disease-specific groups; I recently joined the advanced breast cancer support group. Last evening, I copied and pasted the blog with the MBCN response asking this support group  if they could help me with the philosophy of MBCN since I was a newbie to both groups. I was interested in hearing from people who are living (and dying) with the same disease as I am. I received a couple of responses. This morning I received a response from MBCN and they have decided to re-post The Conversation after all. I believe the group was further along in their desire to add end of life care type discussions than I was able to read into the correspondence that came to me. As  I have written, MBCN is a wealth of information at one's fingertips. I have read and re-read many of their documents over the last year. I am happy on many levels that this group is adding a new and very important topic to its repository.]]> 1858 0 0 0 330 0 0 Lymphedema 101 http://www.sherrifillipo.com/2015/02/23/lymphedema-101/ Mon, 23 Feb 2015 17:10:13 +0000 http://www.sherrifillipo.com/?p=1869 Cáncer de pechos

    Have you ever noticed women wearing what looks like a thick ace bandage on an arm? More than likely they are suffering from a side effect of breast cancer surgery called lymphedema. Lymphedema is a swelling of an area where lymph nodes have been removed. The lymphatic system is a drainage system, if you will, for your body to move fluid through the body and out. If the remaining fluid cannot exit via the remaining nodes, your body part will swell as there is nowhere for the fluid to travel. The Mayo Clinic estimates up to 3 million cases are diagnosed in the US annually. Sometimes lymphedema will start soon after surgery or radiation. Sometimes, however, it will take months or years for this phenomenon to occur. As this is one of the few things I have not experienced, it had not dawned on me to discuss it here until Mom and I were talking about a television program she had seen recently with the actress Kathy Bates.  She had been interviewed about how this condition had really taken a toll on her. I did not realize that she was diagnosed in 2012 with bilateral breast cancer and had undergone bilateral mastectomies. Not every woman will be affected with lymphedema and according to the American Cancer Society, there is still much to learn about this phenomenon. What they do know now is that:
    • the risk is higher if you have surgery and radiation
    • the risk increases with the number of lymph nodes that are removed
    • the risk is higher in obese patients
    Signs and symptoms of early lymphedema include:
    • swelling in the hand, arm, chest area
    • part of your body feels heave
    • skin changes: red, hot etc.
    • new aching, tingling in an area
    • less flexibility in nearby joints
    • difficulty when you dress (putting your arms through sleeves or jackets)
    • articles no longer fit including bras, rings, bracelets even though you have not gained weight
    So what do you do if you have this condition?
    • Make sure that your physician knows that you have an arm or leg that is swelling
    • In addition to wearing a compression sleeve (the thing that looks like an ace bandage) some patients have access to specially trained physical therapists who can offer massage as a way to help your body move the accumulated fluid
    • If you have lymphedema in your arm(s):
      • wear loose, non-binding clothing
      • do not allow healthcare providers to draw blood or start an IV on the affected limb
      • use a thimble when sewing
      • use extra caution when cooking so as not to burn the affected limb
    I have only scratched the surface of a condition that is all too real for millions of men and women. But this may be enough to get you started if you or someone you know has it.  I used a great resource for this posting and have placed the link here if you are interested in more information: Lymphedema facts from the American Cancer Society    ]]>     1869 0 0 0     The Conversation Follow-up http://www.sherrifillipo.com/2015/02/24/the-conversation-follow-up/ Tue, 24 Feb 2015 17:23:17 +0000 http://www.sherrifillipo.com/?p=1878 calm-blue-ocean-14485.jpg At the risk of becoming known as the Dr. Kevorkian of bloggers (!) over the last week, I have had a number of friends, family and readers tell me stories of how end of life discussions have occurred and not occurred in a variety of situations. Some have gone well. Some never occurred leaving the bereaved bewildered. As uncomfortable as many people are with approaching the topic of death and dying, many still indicated, and I wholeheartedly agree that no one wanted to give their loved ones, one more thing to do during the most difficult time of his/her life - that being to determine what would my wife/husband/mother/father/friend want me to do right now? Things as critical as when to stop treatment? CPR? No CPR? Ventilator? No ventilator? Burial? Cremation? Service? No service? Less critical but still important: Flowers? No flowers? Music? What kind? Scripture? Which charities to highlight in an obituary? On and on I could go. I may be wrong but I tend to think if you could see having this conversation as a gift, it might be an easier conversation to have with someone. And I might add, you don't have to do it in one fell swoop. You can take it small steps at a time. A reader told me she was glad that I had written that it was important for both the ill and the well to start having the conversation. "Because," as she said, "You never know."

    For Those With Advanced Cancer

    For those of us who are a little further ahead  in need of having these conversations, when it comes to your healthcare provider, for some it can be intimidating. (I wish it weren't so.)  I have posted a link here that might help. It is from an organization, Choosing Wisely, an initiative of the American Board of Internal Medicine. On the website there are many topics listed, written for the public, to use as a springboard for conversation with their physicians. This one Care at the End of Life for Advanced Cancer Patients  offers a list of  questions to take to your physician that you might want answered such as:
    • Are there things I can do to make my quality of life better?
    • How long do I have to live if I have more treatment?
    • What will happen if I do not have more treatment?
    There may be some questions you don't want to ask and if so don't bring them up. The point of these educational information sheets is to start a dialogue that may be easier for some if they have a guideline. On a personal note, I have noticed that unless I bring up the topic of end of life with my oncologist and my oncology nurses, they will not bring it up! So, if you are waiting for this particular subject to be brought up, unless you do it, it might not get initiated. And finally, the concept of hospice and palliative care continues to be so misunderstood. I have placed a link here from the same organization which provides easy to understand information on both topics. Hospice and Palliative Care  ]]>     1878 0 0 0 333 0 0 334 0 0     One Woman's Thoughts on Talking About Cancer http://www.sherrifillipo.com/2015/02/25/one-womans-thoughts-on-talking-about-cancer/ Wed, 25 Feb 2015 15:03:45 +0000 http://www.sherrifillipo.com/?p=1886 Bright paints of coral reeves

     I have become very aware through blogging how difficult it is for some people to talk about cancer nevermind end of life conversations. I don't know if it is my personality or that I have been a nurse for such a long time but I think I could ask someone just about anything or listen as they tell me just about anything without being too uncomfortable. One of my "golden girls" (past post) once said a minister had preached that a person can only go as deep with someone else as they have gone with themselves.  I agree that those who have taken a deep dive within themselves can dive deep with others - those that haven't cannot and will avoid it.

    What to Say to People with Cancer

    I was noodling around on the internet today and stumbled upon a website of "10 things cancer patients love to hear." It is from a website for cancer support and this website asked cancer patients what they like to hear from family and friends. Personally, I  agree with most of them but not all; yet, if you have trouble reaching out to neighbors, friends, co-workers or family, this may be a good place to start. Here is their list:
    1. I don't know what to say but I am here for you.
    2. I'll ride the waves with you until the storm calms.
    3. I'm here to listen.
    4. Let me help with.....and be specific not "if you ever need anything, just let me know"
    5. What have you been up to? How is your family? Talk to me about anything but cancer.
    6. I love to hear the phone ring or that I have a text.
    7. You'll be in my prayers.
    8. I have mail.
    9. Where can I learn more?
    10. How about a hug?
    My favorite? I am here to listen. My least favorite? You'll be in my prayers. Surprised? Because as I have gotten older, I am more aware of the need to only say it if you mean it. Please don't tell me you are going to pray for me if you aren't.

    What Not to Say to People with Cancer

    How about the reverse? What do cancer patients not want to hear? This is my personal list so only blame me if you disagree!
    1. A good scan? You should be happy with that news!
    2. Your (metastatic) cancer hasn't spread to the lungs/bones/liver/brain? You should be happy!
    3. Well, you know...we are all dying.
    4. Eat more green vegetables....take vitamins....etc.
    5. I had a friend who was given xx amount of time and she lived 20 years.
    6. Your bald head doesn't offend me in the least.
    7. Does cancer run in your family?
    8. You're thinking about stopping treatment?
    9. You are so lucky you don't have to work.
    10. You must be angry with God.
    I am not angry with anybody. In fact as strange as it sounds, in many ways I am as happy as I have ever been. It reminds me of a verse from the book of Philippians  that for years I read quizzically wondering how it would feel to live those words but in the past 2-3 years, I can honestly say I am there: I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. Philippians 4:12 ]]>     1886 0 0 0 336 0 0 337 http://gravatar.com/sherrifillipo 0 0 338 0 0 339 http://gravatar.com/sherrifillipo 0 0 342 0 0     Miscellaneous Nonsense http://www.sherrifillipo.com/2015/02/26/miscellaneous-nonsense/ Thu, 26 Feb 2015 14:58:46 +0000 http://www.sherrifillipo.com/?p=1899 two hedgehogs   And I think I have really taken a lifetime of falls research and figured it out. I read this on Facebook (yes, I have gone to the dark side - ha) and I do believe I know now the causation for falls: I am not a falls risk. It's just that the floor hates me, tables and chairs are bullies and walls get in my way!

    For those of you who need a little encouragement today, I really liked this list below, especially the one that states cancer "cannot invade the soul." It reminded me of what is called the blood-brain barrier which doesn't allow many things to cross it, a way to protect the most vital of organs.

    What cancer cannot do:

    It cannot cripple love

    It cannot shatter hope

    It cannot dissolve faith

    It cannot destroy peace

    It cannot kill friendship

    It cannot suppress memories

    It cannot silence courage

    It cannot invade the soul

    It cannot steal eternal life

    It cannot conquer the spirit

         

     

    ]]>     1899 0 0 0 335 0 0     MD Anderson Cancer Center Physician on the Possibility of Curing Metastatic Breast Cancer Published Thursday, February 26, 2015 http://www.sherrifillipo.com/2015/02/27/md-anderson-cancer-center-physician-on-the-possibility-of-curing-metastatic-breast-cancer-published-thursday-february-26-2015/ Fri, 27 Feb 2015 15:18:16 +0000 http://www.sherrifillipo.com/?p=1904 1904 0 0 0 What We Wish You Knew http://www.sherrifillipo.com/2015/02/28/what-we-wish-you-knew/ Sat, 28 Feb 2015 16:24:16 +0000 http://www.sherrifillipo.com/?p=1915 Roller Coaster

    Things cancer patients wish you knew (or understood):

    • We know we say we are tired all the time. But the sad thing is, it is true. The fatigue is unlike non-cancer fatigue in my opinion. It is somehow deeper or more encompassing than what I remember from several years ago.
    • Some days we can eat; other days we cannot. If we join you for dinner or go out to a restaurant, we will eat what we think we can stomach but you  may think we choose strange items. Carbohydrates seem to settle my stomach. I was never much of a bread person, but I find now that it is one thing that I can eat so I do. Sometimes that is all I eat for a meal.
    • One day we feel well enough to visit you or have you visit us; the next day we can hardly imagine getting out of our pajamas and meeting anyone to do anything.
    • Some of our chemos make racing to the bathroom something we have to do at a moment's notice. In some situations it is more comfortable to explain to you why we are cutting you off in mid-sentence to run than others.
    • Sometimes we turn down an offer to a social event because of the GI problems when we otherwise feel pretty good. Being placed in situations where a quick discreet exit to a bathroom  is not possible can be very stressful.
    • Some days we  feel we can talk on the phone; other days we simply can't or don't want to. Leaving voicemail messages that don't make us feel guilty about not picking up makes it easier for us.
    • Some days we feel social; other days we just need to be alone. Sometimes you never know which way it is going to be. We may seem fickle but we are riding on a rollercoaster every day, one on which we cannot get off.
    ]]>     1915 0 0 0 340 0 0 341 http://gravatar.com/sherrifillipo 0 0     Going Viral: Stomp Out Breast Cancer Monday http://www.sherrifillipo.com/2015/03/02/going-viral-stomp-out-breast-cancer-monday/ Mon, 02 Mar 2015 14:56:45 +0000 http://www.sherrifillipo.com/?p=1926 must understand the difference between breast cancer and metastatic breast cancer.    ]]> 1926 0 0 0 343 0 0 The Easter Bunny May Be A Little Late This Year http://www.sherrifillipo.com/2015/03/03/the-easter-bunny-may-be-a-little-late-this-year/ Tue, 03 Mar 2015 14:16:39 +0000 http://www.sherrifillipo.com/?p=1906 rabbit

    (This post was postponed one day due to the need to publish the 'stomp out cancer' post on Monday.) So I am sure you have heard that NC got a few inches of snow last week. I had no fewer than four texts, pictures and even one video of friends and family showing me snow! The longer I live in the north, the more I want to join in and  say, "Aren't those southerners cute in their fascination of the white stuff?" But I am really no better as evidenced by the photo of me from a week ago Friday standing out on the sidewalk in Corning... But today being Monday and  most of you who know, it is Momma Monday. So here is my story. Friday morning, I got a facetime request from Mom. And off we went. She was sitting in her flannel pajamas stating that she had taken a break from cleaning the kitchen. And I noticed that she kept looking off as if looking out a window. "What are you doing" I asked her and she lamented that the snow had already fallen off the trees and it was slowly melting. I asked her if she had made the rabbit on the tree yet. Another  Pintrest photo that we each had seen a few weeks back. You should have seen the face she made when she yelled out, "NO! I absolutely forgot!" And she began to grumble. I told her to go on out there and do it before it was too late. (The chance of there being any more snow this season is almost nil and the chance of them getting  another 6 inches is years away.) So, she agreed she needed to do it and hung up. About an hour later I got the above picture. When I called her, she told me it took a lot of work as one little leg would start sliding down the limb before she could get the other one made. But obviously she succeeded. As we talked, I began to hear splashing sounds and I asked, "Mom. What do I hear? Are you talking to me in the bathtub?" "Yes I am! Do you know how cold it was out there in my pajamas and work boots? I nearly froze to death." All I could envision were the neighbors watching her from the warmth of their kitchens shaking their heads going, "Gladys. You've got to come over here and see what this nut is up to this time!" I began to laugh and told her I couldn't talk to her any longer. I had to text Dad to show him what his bride is up to while he toils away at work all day. I am afraid if I don't show him at that moment, by the time he got home, Bunny Rabbit will have slid down the tree and hopped off into the woods.]]>     1906 0 0 0 345 0 0 347 0 0 348 0 0     Chemo Brain is Alive and Well http://www.sherrifillipo.com/2015/03/04/chemo-brian-is-alive-and-well/ Wed, 04 Mar 2015 16:15:53 +0000 http://www.sherrifillipo.com/?p=1940 Though insidious, chemo brain is with me all the time. It pops up at the most inopportune times. I found another New York Times article that I thought would bring this home to those of you who are working with or living with someone who is or has been on chemo in the past. Some researchers says though the chemo  brain effects may lessen over time, the phenomenon may never go away. (So be patient with us!)   Click the link below to access the article:

    LIVING WITH CANCER

    Brains on Chemo

    Forgetfulness, trouble concentrating and word loss are common manifestations of the condition known as “chemo brain.” For many cancer patients (and the people who love them), this can be a mystifying experience, writes Susan Gubar.

     ]]>     1940 0 0 0     Male Breast Cancer: Similarities & Differences http://www.sherrifillipo.com/2015/03/05/male-breast-cancer-similarities-differences/ Thu, 05 Mar 2015 13:02:28 +0000 http://www.sherrifillipo.com/?p=1955 male and female breast tissue

      Male breast cancer isn't discussed much for many societal reasons, I believe. But I thought it was significant enough as we broaden all the myriad of ways breast cancer can change the lives of us or our family members. Below are some statistics that both show the similarities and dissimilarities of the disease by sex. And at the bottom of the list is a video of an oncologist who actually has male breast cancer. I think he makes some great points and wanted to include it here.

    tshirt

      According to MedicineNet.com website:
    • Male breast cancer is rare, only about 1% of all breast cancers
    • The risk is increased by elevated estrogen, previous radiation and family history of cancer
    • Infiltrating ductal carcinoma is the most common type of male breast cancer
    • A lump beneath the nipple is the most common symptom of male breast cancer
    • Male breast cancer is staged (determining the extent of spread of the tumor) the same way as women's breast cancer is staged
    • According to the National Breast Cancer Foundation, men carry a higher mortality than women do, primarily because awareness among men is less and men are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment
    • This year, an estimated 2,360 men in the United States will be diagnosed with breast cancer. An estimated 430 men will die from it.

    Make Breast Cancer Video

       

    ]]>     1955 0 0 0     Bells Versus Balloons http://www.sherrifillipo.com/2015/03/06/bells-versus-balloons/ Fri, 06 Mar 2015 16:33:34 +0000 http://www.sherrifillipo.com/?p=1968 Gold bell

    Yesterday I had chemotherapy at my home town hospital instead of taking that 45 mile ride through the hills of NY/PA. I did it because it is only 5 miles from my home and my oncologist is now spending her Thursdays there. Since it was the hospital I used to work at (therefore I know a lot of folks there) I thought I would try it. And since my love is process improvement I was interested in seeing the differences in infusion practices between the two facilities. What I ended up ruminating about afterward  I could have never guessed.

    Fall 2014

    Going back a few months, I read in our hospital newsletter that we were going to be filming commercials to advertise our new hospital in Corning. A long time in coming, a brand new facility was being constructed and we wanted to showcase some of our new departments. When the announcement came about the ads, one of them was going to be for our new cancer center. Up until now, our oncology service was in a building just down the road from the old hospital. Now it would be a part of our new facility and it was going to be gorgeous. A fireplace in the waiting area, huge windows that looked out upon our rolling hills. Thinking outside the box, I queried if I could be considered for the cancer patient as they were going to be using many local folks. The response back was for that role, the producer wanted to use an actress (!) as he didn't think a 'real' patient could hold up under the time it would take to shoot a commercial. I thought having a real cancer patient and employee of the organization to boot would be a cool way to convey the story but alas, it was not to be. Several months later, while watching television, the ad popped up. Some of the people I recognized and then there she was, head wrapped in a scarf "completing" her chemo and ringing a bell for all the world to see and hear that she was finished with treatment. It was a very well done commercial.

    Yesterday

    Fast forward to yesterday. The place, as lovely as I remembered it. The oncology team was competent and exceedingly friendly. Friends/colleagues of mine found me and it was good to be surrounded by them. As my infusion was running, I heard a bell ringing. And ringing. And ringing. And I had a flashback of the commercial and a sudden awareness that someone in the center had completed her treatment. (To my knowledge nothing like this is done where I usually have my chemo.) I had the oddest and saddest flood of emotion wash over me. While hesitatingly happy for this woman, I fantasized about running out and yelling something - some word of caution without spoiling her moment. I then remembered in Virginia when my treatment was completed, they gave me a bouquet of balloons. That made me very happy and indeed I thought I had 'beat' it and would never have to look at those women again. The only thing I think now is that I am glad the balloons were quiet and did not bother those women who were there with terminal disease knowing that their balloons were never going to arrive.]]>     1968 0 0 0 355 0 0 356 0 1 357 0 0 358 0 0 352 0 0 353 352 1 359 0 0 360 358 0 361 357 0 362 359 0 441 0 0     Viruses Killing Cancer: What You Need to Know http://www.sherrifillipo.com/2015/03/09/viruses-killing-cancer-what-you-need-to-know/ Mon, 09 Mar 2015 16:38:17 +0000 http://www.sherrifillipo.com/?p=1979  virusLots of folks have asked me about the HBO/VICE documentary that was recently on television. Three physician researchers were interviewed along with three patients who had their cancers "cured" by reengineering viruses  and using them to "attack" and kill three different types of cancers. The cold virus used to 'cure' a brain tumor, the measles virus to 'cure' multiple myeloma and the HIV virus to 'cure' leukemia. (I have placed a link to the documentary at the bottom of this post.)

    I know it sounds like science fiction but the physicians come from world renowned institutions: the Mayo Clinic, MD Anderson Cancer Center and the University of Pennsylvania. And indeed it appears they are on to something. But here is the rub: shows like these tend to be highly sensational - they're meant to be and I get that. If it doesn't sound interesting or provocative who is going to watch, right? But I worry for all those thousands out there who are out of options and are looking for a cure.  They are desperate for their loved ones. I guess you could say it grieves me because the likelihood of this methodology being used in the near future isn't probable though the documentary approaches it as if it is. Here are a few things which the program didn't discuss:
    • the researchers are talking about very small numbers of patients who have been cured using this method; there would need to be thousands more subjects to truly say they had found something that worked; one of the researchers at the American Cancer Society said that curing individuals versus curing cancer are two entirely different things
    • there are no long term outcomes yet; the subjects may all get cancer again
    • the cancers that were discussed were mostly  "liquid" cancers not solid cancers like breast, lung and colon cancer
    • patients and families across the country may get their hopes up too high, thinking that there is an imminent cure for whatever type of cancer they have
    I wanted to show you something that astounded me - just to drive a point home. The alphabetized list below is a list ONLY of drugs A-D that were once on the market and then later withdrawn by the FDA.  This means that  after the public began using them, they were shown to be dangerous (examples being liver toxicity, cardiac toxicity). I know I am being dramatic but I wanted to show you a very partial list of drugs that went through all the clinical trials required and were approved by the FDA and then withdrawn. Linking this back to the topic at hand, while I agree this is an exciting topic to think about and discuss, all the answers are not known yet in which to determine its efficacy. Please don't think I am a naysayer. I'm right along with everybody hoping for a cure as I sure do need one. But the nurse in me is cautionary and I feel I must show the other side of the coin. FDA withdrawn drugs - partial list only A-D:
    • Alatrofloxacin
    • Alclofenac
    • Alpidem (Ananxyl)
    • Alosetron (Lotronex)
    • Althesin (=Alphaxolone amineptine + Alphadolone)
    • Amineptine (Survector)
    • Aminopyrine
    • Amobarbital
    • Amoproxan
    • Anagestone acetate
    • Antrafenine
    • Aprotinin (Trasylol)
    • Ardeparin (Normiflo)
    • Astemizole (Hismanal)
    • Azaribine
    • Bendazac
    • Benoxaprofen
    • Benzarone
    • Benziodarone
    • Beta-ethoxy-lacetanilanide
    • Bezitramide
    • Bithionol
    • Broazolam
    • Bromfenac
    • Bucetin
    • Buformin
    • Bunamiodyl
    • Butamben (Efocaine)(Butoforme)
    • Canrenone
    • Cerivastatin (Baycol, Lipobay)
    • Chlormadinone (Chlormenadione)
    • Chlormezanone (Trancopal)
    • Chlorphentermine
    • Cianidanol
    • Cinepazide
    • Cisapride (Propulsid)
    • Clioquinol
    • Clobutinol
    • Cloforex
    • Clomacron
    • Clometacin
    • Co-proxamol (Distalgesic)
    • Cyclobarbital
    • Cyclofenil
    • Dantron
    • Dexfenfluramine
    • Propoxyphene (Darvocet/Darvon)
    • Diacetoxydiphenolisatin
    • Diethylstilbestrol
    • Difemerine
    • Dihydrostreptomycin
    • Dilevalol
    • Dimazol (Diamthazole)
    • Dimethylamylamine (DMAA)
    • Dinoprostone
    • Dipyrone(Metamizole)
    • Dithiazanine iodide
    • Dofetilide
    • Drotrecogin alfa (Xigris)
     VICE documentary]]>     1979 0 0 0 365 0 0 407 0 0 408 http://gravatar.com/sherrifillipo 0 0 409 http://Inspire 0 0 410 409 0     My Friends at the Social Security Office http://www.sherrifillipo.com/2015/03/10/my-friends-at-the-social-security-office/ Tue, 10 Mar 2015 15:48:40 +0000 http://www.sherrifillipo.com/?p=1997  Red TapeLest you think that my interactions with government officials ended with my experience last year with the TSA lady, you would be wrong. I wish you weren't ...For those of you who are not aware, like many people across the country, I am on social security disability - based on diagnosis and prognosis, I get a small paycheck every month. And as you would expect, there are governmental constraints associated with this payment. One is that if you want to 'try' to return to work, you may do so for a certain number of months and then when you reach that limit, you can continue to work as long as the earnings are not "substantial." So as many of you know, last year I worked from home and did some teaching at the hospital and tried to keep my hours down.

    Last Week

    As the new year rolled around, I received a January check but not February. "Oh, no," I thought, "Here we go again." And sure enough off we went. Luckily the social security department is two blocks away (I told you Corning was golden!) and I walked there last week, took a number and settled in for a long wait. Sure enough, they didn't disappoint! When my number was called, I went up to a very public window in front of the world and queried about my missing check. It doesn't take much to befuddle. The kind lady printed out reams of paper about me (I can only imagine what she learned) and then said she had no idea. She then put a call into Albany and told me to sit back down. I sat back down and watched the TV screen scroll through a myriad of governmental notices in Spanish. I tried to make a game of how many words I could translate on my own. But when they began to use a large white cat with big blue eyes to explain something about social security, I couldn't make sense of it. Who was that cat supposed to represent? Obama? Me? Then my number was called again. The nice lady told me that "they" were still trying determine my eligibility for 2015. Did they know something that I did not? Did something in that ream of paper she printed tell her that I had been cured of cancer? Had I gotten some virus while sitting in a room full of coughing, sneezing people that targeted my cancer and now I was healed? Alas, I was told to go home and call Albany.

    Back Home and Then Back Again

    Albany told me that I was now approved for 2015 and that a (late) check would be deposited in my bank within a week. I thanked her and the next day I looked online because that's just the way I am and do you know what I found? Two checks deposited! You would have thought I would have been thrilled but all I could think about was having to trek back to that office and off I went. The nice lady continued to be befuddled. Another call to Albany. Then the answer: you have been paid late for one check and early for another so you are ahead until April. What? I thanked her and as I left, because it is a public arena for all to hear, on old farmer looked up at me and said," You can't make this stuff up!" I told him it had to be the new math and I couldn't understand a word she said.

    Yesterday

    Is it over? Not hardly. A few days later, I looked in my bank account again and guess what? Another check!! What? A third trip back to the SS office? I began to think this was my oncologist's sneaky way to get me up and out and walking on frozen sidewalks. Back I went. The same lady stood at the same open window. I knew the drill. I signed in, took my number and sat down. What I haven't told you to this point is that there is an armed sheriff who works there - just sitting waiting on one of us to go postal I guess...and I can understand why. And there she sat. Suddenly chemo drug kicked me in my stomach and I had to make a quick judgment: hold it in and hope my number was called quickly or lose my place in line and beg the armed guard for a bathroom. Chemo wins every time. What I didn't expect was for her to escort me to the bathroom and stand guard while I used it. Was I being protected or being guarded? Walking back with my personal sheriff, I thanked her and told her sometimes chemo sneaks up on me. Then without warning, she smiled and started to tell me about her mother who is on an oral chemo for lung cancer and said, "You know that woman never smoked a day in her life." I told her I was sorry. She then rested her hand on her revolver and asked me if I had been "living clean." Crap, I thought. What does she mean? I divulged, "I have never smoked either." And left it at that. Whew... Soon my number was called and when I told the nice lady  I had received another check, she told me she knew and tried to explain the above scenario. No, I told her, a third check. And I handed her a personal check to cover the one I had just gotten. Well, I about blew her mind.  She started tapping on that computer, paper starting spewing out of her printer. Oh glory. All I wanted to do was run home and put my head under my pillow. She told me there were no notes about this check and if I gave it to her it might mess things up. (Oh, I thought, no lady, if I KEEP this check, it will mess things up.) She fretted and fretted and then finally took my check and sighed. As I was trying to get away quickly lest she change her mind, the sheriff called me over and said, "You look so young to have cancer. But you know what? You look great." And as I pushed open the door, she yelled, "Keep eating healthy!" Oh my...  ]]>     1997 0 0 0 367 366 1 368 http://sherrifillipo.com 0 0 370 368 0 366 0 0 371 0 0 372 0 0 373 http://twitter.com/rengeko 0 0 374 0 0     Tears of Laughter: Good for the Soul http://www.sherrifillipo.com/2015/03/11/tears-of-laughter-good-for-the-soul/ Wed, 11 Mar 2015 16:02:15 +0000 http://www.sherrifillipo.com/?p=2007 Bull in Gaudi style - spanish souvenirSo I called Momma yesterday and forgot it was her "flower shuttle" day where a group of people get together, design small flower arrangements and  then take them to nursing homes. Don't you think that is a cool idea? I love flowers at my bedside and can only imagine the positive impact that small gesture has.  It has been a nice way for Mom to integrate into a new community. She was driving home when I called so I knew she wanted me to read that day's blog. It's just our routine. She drives. I read. But on the funny post days (well at least I think they are funny) I am always worried she might drive off into a ditch. So far so good. But it reminds me of one day many years ago when we were out shopping. I was the one driving and she looked over at me and said, "Look at this picture." When I looked down, I wasn't prepared for what I saw. There was my mother and a friend riding a mechanical bull. One hand on the saddle, one hand up in the air and a look of startle on her face. I started laughing uncontrollably; I started crying and then I couldn't see the road. Looking back now, I don't think I have ever laughed any harder than that afternoon. Why would she endanger our lives like that?

    There was my mother with a little red bandana tied just so around her neck. She was wearing a cowboy hat. It had to be borrowed. Heaven knows she doesn't wear one in NC. But the funniest thing was, if you looked really closely you could see she was in a nice pair of dress flats which to me made it all the funnier. I think she must have been at a conference of some sort, knowing we don't have 10-gallon hats or mechanical bulls in Winston-Salem. The one thing you can say about my mother is that she is a good sport. Fast forward to two years ago, we were sitting in Mom's den  - my son, Dad, sister and Mom - one Sunday afternoon sorting through piles of old pictures and wouldn't you know that bull photo rose to the top of the heap. My sister started giggling, she handed it to me and I started giggling. The room was soon awash in laughter. Mom is so tiny, that bull so outrageously gigantic and the look on her face was, "How did I get up here?" Unbeknownst to either of us, while siting at the beach last summer, that same darn picture came up in conversation. I had secretly taken a picture of it on my phone and once my sister started talking about it, I jauntily pulled it out to show her. She just raised one eyebrow, whipped out her phone and showed me her own copy. Mom just rolled her eyes. She is after all, a very good sport.]]>     2007 0 0 0 375 0 0 376 0 0     Both Sides Now: What Happens When a Nurse Becomes a Patient? http://www.sherrifillipo.com/2015/03/12/2028/ Thu, 12 Mar 2015 17:17:43 +0000 http://www.sherrifillipo.com/?p=2028 mbcn_buzzheader-1   I was  interviewed this week by the Metastatic Breast Cancer Network. The title of the article: Both Sides Now: What Happens When a Nurse Becomes a Patient? The link below will take you to the website. There is a part two of the interview which will be posted this weekend. It was a question and answer interview.   Interview with Sherri Fillipo, RN    ]]> 2028 0 0 0 377 0 0 The Scar Project: Photographing Women with Mastectomy Scars http://www.sherrifillipo.com/2015/03/19/the-scar-project-photographing-women-with-mastectomy-scars/ Thu, 19 Mar 2015 14:33:05 +0000 http://www.sherrifillipo.com/?p=2038 For some, this will be a difficult video to watch but for those of us who have to look at ourselves every day, it is important for people to understand what we look like after the ravages of surgery. As I have quoted before, Dr. Susan Love, surgeon and advocate for those with metastatic breast cancer, she has said when you have to cut off body parts as a way to treat a disease, it's time to find a better way.  

    Reposted from Paige Turner's blog, TheBreastCancerSite.com

    "The SCAR Project aims to show the painful realities of women who have undergone treatment for breast cancer. These powerful portraits capture the beauty and pain of survivors in a moving collection that is making its debut in Canada. We love how these photos tactfully address how women’s bodies change as a result of fighting breast cancer. There’s tragedy in each image but also strength and resolve. " [embed]http://https://www.youtube.com/watch?v=oaSjn0Cdr4I[/embed]  
    ]]>     2038 0 0 0 396 0 0 406 396 1     Four of Us http://www.sherrifillipo.com/2015/03/13/four-of-us/ Fri, 13 Mar 2015 14:26:10 +0000 http://www.sherrifillipo.com/?p=2051 A photo of beach sunset and sea gulls

    I had just finished my morning devotional and was thinking how relevant it was when the phone rang. The devotional today was teaching the reader to learn to live above one's circumstances and that "trouble and distress are woven into the very fabric of this perishing world..." The verse today for reflection was, "So with you: Now is your time of grief, but I will see you again and you will rejoice and no one will take away your joy John 16:22. So the phone. It was Mom. She had just learned of a close family member who was rushed to the hospital yesterday, healthy up until that point. This relative was told yesterday that there is metastatic cancer in the brain. I was stunned. I am stunned. This family member, to his/her knowledge never knew he/she had cancer to begin with. So as I write, I have had three calls since Christmas of three fairly young family members all of whom have been given a diagnosis of cancer. All of them completely out of the blue. Multiple pockets of our family shocked beyond belief. If you add me, that makes four. I am very sad today. Not for me as much as for them. All four of us live so far from each other. My dream would be to magically jet to each one and tell them that I love them and how much they mean to me and to read the above scripture to them. I want them to know that this life is brief, like a mist, the Bible says that comes and then quickly goes. And that the unseen world, heaven, is just around the bend for all of us. Not the four of us, ALL of us. I remember being told many years ago that our lives are like weavings of cloth. We live underneath that cloth and see all the knots and stray threads. God is above that fabric and only sees the perfect design. When we die, we will be able to rise above our circumstances as the devotion says and we will finally be able to see that beautiful tapestry landscape. I am praying for my three beloved relatives. Would you say a prayer for them too?]]>     2051 0 0 0 378 http://theasymmetryofmatter.wordpress.com 0 0 379 0 0 380 http://gravatar.com/sherrifillipo 378 0 381 0 0 382 0 0 383 0 0 384 383 0 385 382 0 386 0 0 387 http://gravatar.com/sherrifillipo 386 0     The Butterfly Effect http://www.sherrifillipo.com/2015/03/17/the-butterfly-effect/ Tue, 17 Mar 2015 14:14:59 +0000 http://www.sherrifillipo.com/?p=2061 Butterfly origami Am I the only one who has never heard of this phenomenon? Probably. But at any rate it is both  scientific  and sociological. The scientific effect states that theoretically the flutter of a butterfly's wings here could in theory disrupt hurricanes way over there on the other side of the world. Wild notion, right? I can't speak much more to this concept - it is all over the internet if you want to read scientific theory, but I would like to spend the rest of the time on the sociological aspect. Did you see the program over the weekend that showcased a man who is living and dying with ALS? He is from my home state of NC and loves a krispy kreme donut as only a southerner can. I will let you watch  this video and have him explain to you what he did to start his butterfly effect. I was in awe. And I want to do the same. I bet you will too... [caption id="" align="aligncenter" width="196"] Chris Rosati[/caption]        ]]> 2061 0 0 0 390 0 0 392 0 0 393 http://gravatar.com/sherrifillipo 392 0 Improving Your Cancer Patient Experience: Part II Interview http://www.sherrifillipo.com/2015/03/16/improving-your-cancer-patient-experience-part-ii-interview/ Mon, 16 Mar 2015 12:17:50 +0000 http://www.sherrifillipo.com/?p=2069 mbcn_buzzheader-1 Last week, the metastatic breast cancer network interviewed me both as a nurse and as a patient. Over the weekend, they posed a series of questions to me that women with terminal cancer  want some answers to. The link below is the article with the questions and answers.

    Sherri Fillipo, RN

    Interview, Part II

    ]]>     2069 0 0 0 391 0 0     Man with Friend Has Cancer: Friend is Going Through a Rough Time http://www.sherrifillipo.com/2015/03/20/man-with-friend-has-cancer-friend-is-going-through-a-rough-time/ Fri, 20 Mar 2015 12:29:54 +0000 http://www.sherrifillipo.com/?p=2073  338px-The_Onion_svgAmerican's Finest News Source

    Do you know the publication the Onion? It is famously known for satire, wit and can poke at people with the best of them. When I read this "article" a couple of days ago, I lost it. Many have felt this way when listening to friends of those with cancer despair of "their" hardship. This will make Friday funny for you, I hope! BISMARCK, ND—Three months ago, Mark Sennis received the news that everyone dreads: Ben Murphy, a friend and coworker with whom he "occasionally went out to lunch," had been diagnosed with cancer. Sennis, who has been suffering from having a friend with cancer since July. "You never think you're going to be the one," Sennis said. "At first, I remember thinking, 'How can this be happening to me? What have I done to deserve to have a friend with cancer?'" Sennis, who has known Murphy since they started working in the same department at Motorola in 2003, said having a friend with cancer is "a life-altering experience." "People ask me how I'm doing, and I say, 'I'm scared and I'm angry,'" Sennis said. "Unless you've personally experienced the pain and hardship that comes with having a coworker you're fairly close to get cancer, you wouldn't understand." Sennis said that, while it initially seemed like "life had come to an end," he "made the decision to keep living." "One thing I've learned in all this is that life goes on," Sennis said. "Well, maybe not for Ben. But for me. The only thing I can do is take it one day at a time." Sennis said he doesn't want people feeling sorry for him. "A lot of my friends start to say 'I have a friend who's just been fired,' or 'I have a friend who tore a tendon,'" Sennis said. "Then, they realize that I have a friend with cancer, and they get quiet, like they think they can't discuss their problems with me anymore. I just want people to treat me like normal." Sennis said he wishes he'd appreciated the good times he enjoyed with his friends before he got the news. "You never understand what you have until your friend's cancer takes it away," Sennis said. "Like, I used to complain about having to go to Wednesday Wings with the guys from sales, but last week we had to cancel because Ben was getting a bone-marrow biopsy, so I sat at home alone all night." "It was a pretty depressing picture," he added. Sennis said chemotherapy has been particularly hard for him. "Ever since the chemo started, it's been a whole other story," Sennis said. "I had to spend a good part of my Sunday hanging out in the waiting room last week. I was so exhausted I could barely move." "Just try finding something decent to eat out there," Sennis added. "I ate a sandwich from the hospital deli, and the bread was, like, Wonderbread, and the turkey tasted terrible, like it was day-old or something." Sennis said that, ironically, the presence of Murphy's family made the situation more difficult." I'm going through an emotional time," Sennis said. "Ben's entire family was the last thing I needed at the hospital. Do you realize how hard it is to talk to people you don't know at all?" Sennis added: "The hardest part was talking to Ben's girlfriend. I never liked her, but because of Ben, I had to go through these awkward conversations. 'How many more chemo sessions does Ben have?' 'Is Ben keeping down his food?' It was really hard." Sennis said his struggle has made him reconsider his relationship with God. "I wonder why God would do this to me," Sennis said. "It's like God is punishing me for something by giving cancer to a friend of mine." Due to the adversity he has faced, Sennis said he has had to take special care of himself. "I don't consider giving up an option," Sennis said. "So, for the past two months, twice a week, I've been treating myself to a massage. It's expensive, but it's the least I can do for myself as I go through this really tough time." Added Sennis: "I'm not going to let Ben's cancer beat me."]]>     2073 0 0 0 397 0 0 398 397 1 399 0 0 404 http://gravatar.com/elizabby 0 0 405 404 1 401 0 0 402 http://gravatar.com/sherrifillipo 399 0 403 http://gravatar.com/sherrifillipo 401 0 460 http://gravatar.com/susannj30 0 0     God (and crows) are Funny http://www.sherrifillipo.com/2015/03/18/god-and-crows-are-funny/ Wed, 18 Mar 2015 13:07:19 +0000 http://www.sherrifillipo.com/?p=2081 From: Audubon Author: Dan Nosowitz From: Audubon
    Author: Dan Nosowitz[/caption] Below is an article that I fell in love with when I read it recently. I have no other reason than that to share it with you now. I have always wanted a crow to drop treasures near me about as much as I want my own hedgehog and you  know how much I want that. If I had to choose between the two, I am not sure which way the vote would go. Maybe it's good thing I don't have to decide.   What if we could be friends with wild birds? Seattle-native Gabi Mann seems to have achieved that goal with one of the smartest species on the planet: the American Crow. Never mind that she’s only 8-years old. This imaginative kid has a unique relationship with her neighborhood corvids, as told in a story by the BBC News Magazine. It all started two years ago, when Gabi began feeding local flocks of crows. At first it was haphazard—a dropped chicken nugget here, a crumb from a sandwich there. But the crows took notice, and soon enough Gabi’s hospitality went from being accidental to intentional. These days, Gabi’s crows perch nearby whenever she’s outside, hoping for a feast or even just a morsel. But the spirit of giving inhabits both the girl and the beast. Soon enough, the crows were showering Gabi with all sorts of loot. Every day, Gabi leaves out food (mostly peanuts, which are a big hit) in the backyard for her groupies. In return, they leave her gifts—shiny baubles like polished sea-glass, and odder trinkets, like a rusty screw or tube of chapstick. In what could have been a coincidence or a lovely curiosity, the crows promptly returned a lens cap that Gabi had lost while taking some photographs (of a bird, naturally) in an alleyway. And so the plot thickened. Crows, and all other members of the corvid family (which also includes jays, magpies, and ravens), are renowned for their intelligence. They’re known to be prodigious tool-users, and are more adept with tools than all other animals short of the great apes. Even their social behavior mirrors ours in some ways; they’ve been observed performing funeral rites for their deceased members of their murder (it’s the name for a group of crows—not sinister at all!). Gift-giving isn’t uncommon among crows; John Marzluff, a professor of wildlife science at the University of Washington who studies the relationship between crows and people, said in an interview with the BBC, “I can't say they always will [give presents], but I have seen an awful lot of things crows have brought people." (Dead birds are one grisly example.) Sometimes those gifts aren’t entirely welcome: Gabi’s mother once had to throw out a rotting crab claw that the crows had so lovingly bestowed upon her daughter. But Gabi doesn’t seem to be perturbed by the oddities she receives; she keeps all her gifts carefully labeled and stored, treasuring them like precious jewels. "You may take a few close looks," she said to the BBC reporter, "but don't touch."]]>     2081 0 0 0 394 0 0 395 0 0     OBX with MOM http://www.sherrifillipo.com/2015/03/23/obx-with-mom/ Mon, 23 Mar 2015 14:14:15 +0000 http://www.sherrifillipo.com/?p=2101 Momma's OBX Treasures Momma's OBX Treasures[/caption] Although this is being sent from cold, blustery NY I wanted to have  a Momma Monday like I haven't had in a while. Mom came last week this time to stay with me for a couple of days down at the OBX. Since my last "trip and fall" in Corning, Beloved and Mom are conspiring (I think) and won't leave me alone for long. You never know what will happen when Mom comes blazing in. She arrived in the afternoon and we messed around as they say in the south until supper time when we went across the street to 'my restaurant.' She walked right up to the bar and slammed her hand on it when she saw one of my guys and yelled out, "Where is Sherri?" Meaning why wasn't I behind the bar. Gary jumped, turned around and then hugged me. Like I say, I'm a local. Ha. We were seated at the bar, drinks were poured and we (Gary, Mom and I) all caught up on the news. Another round of drinks were poured, hors oeuvres were ordered and I was at peace with the world. Much later, as the check was  handed to us, Gary remarked that the first round of drinks was on him. Gosh, I love this place. The next day was beautiful, sunny with a high of 75. We walked and walked on the beach. Mom has not had the  best luck when looking for seaglass and she set out  to make up for lost time. Keep in mind Beloved walks six miles minimum a day and therefore one would reason that he might very well find a few more treasures than Mom. Undaunted, she kept muttering to the ocean, " I want more...I need a bottle neck." This is a fairly new phenomenon that we have been finding and by dern Momma wanted one too. (It was not to be.) But look closely. The woman who has never found glass found a couple of large pieces: one green, one bluish and one brown. Never mind that up in the top corner, she found a purple sand dollar along with a lovely blue crab and a couple of conchs. (I am not counting the feathers that she found. Just not my thing.) While she was muttering, she looked down at my legs. It was quite warm remember and I had rolled my pant legs up. She stopped mid-beach and exclaimed, "Boy your legs sure are white!" Like me living in upstate New York hasn't been tough enough this winter she was lamenting my snowy white limbs. "Well, Momma, I have found every time I try and go out to lie in the sun, 12 inches of snow gets in my way." She nodded and kept walking ahead of me and I heard her say, "But she always has tanned legs..." Post Note: The next morning she went out on the deck to look at her prizes. When she realized the blue crab had lost its color, she pitched him over the deck into our bushes. Thank the Lord so far she hasn't done that to me, especially with these snow white legs...    ]]> 2101 0 0 0 416 0 0 417 0 0 418 0 0 419 418 0 420 0 0 421 0 0 422 0 0 423 0 0 424 423 1 425 0 0 440 0 0 God Takes Care of Girls and Gulls http://www.sherrifillipo.com/2015/03/24/god-takes-care-of-girls-and-gulls/ Tue, 24 Mar 2015 13:08:05 +0000 http://www.sherrifillipo.com/?p=2109 Seagulls

    The next morning after Mom had left with her treasures minus that poor washed out crab, I bundled up and took a walk. The temp had dropped 30 degrees. It wouldn't be a long one. The day before walking with Mom, we had noticed hundreds and I mean hundreds of dead fish up and down the shoreline. Walking without stepping on one was a lot like playing dodge ball. In all my years, I had never seen as many fish - don't know what kind but they were good-sized. I mean, if I were a seagull, I would be thinking this was quite a haul. As I walked there were hundreds upon hundreds of sea gulls who must have thought exactly like me. It was a virtual feast for them. No dipping or diving was needed. No hard work to do, just saunter up and down the shoreline with your seagull girlfriend and feast. It made me think of the fishes and loaves story in the Bible, God providing for everyone and everything. I shortened my walk and turned back and as I got to the stairs that lead up to our neighborhood, I spotted a set of keys dropped at the first step, still half-way buried in the sand. I suddenly thought of the person who had lost them. Our community is a virtual ghost town. Until Memorial Day, there may be a half a dozen of us who are living there. On the ring was a car key, a house key, and a medallion that mentioned that she (I just assumed she) was a member of some ocean society. I couldn't stand that she was worried. So I prayed, "God. This is going to take a miracle. I wouldn't know where to start. So bring this person to me or somehow help me get these keys back to her." On my way back to the house I kept a vigilant watch. I passed no one. I looked for Fords. Only one construction truck. I didn't stop. I went to the community's office but no one was there. I thought if nothing else I would call them and tell them I had keys and walk them over next time it was open. I got back to the house, put the keys on the table and kept praying. I took a shower and later went into the kitchen. Looking out my window, I saw what I thought was a locksmith and when I saw him getting ready to take that long thin thing that they jam down the window to release the lock, I realized I had a miracle on my hands! I ran out, pajamas and all yelling like a crazy woman, "Did you lose your keys at the beach?" A lovely young woman looked up dumbfounded and yelled that she had. She came running across the field and I met her half way, dropping the keys in her hand. She looked up at me and I said, "I was praying I would find you! And I did." She thanked me and ran back to her car. Another miracle. Provision for the gulls and keys for the girl. God is always working, acting and answering...]]>     2109 0 0 0 439 0 0     Weekend Update: OBX and Chemo http://www.sherrifillipo.com/2015/03/21/weekend-update-obx-and-chemo/ Sat, 21 Mar 2015 14:08:47 +0000 http://www.sherrifillipo.com/?p=2114 www.obx.org www.obx.org[/caption] Sometimes I forget that you all are not living inside my mind. My lack of follow-up on where I stand with chemo was never conveyed as a couple of friends gently pointed out to me, so I would like to do that now. On Thursday, I will receive my third "small dose" of chemo and then it will be time once again for scans to see if the reduced dose is having any positive effect on the lesions in my liver. One of the side effects of this chemo, Kadcyla (ado-trastuzumab emtansine), is an increased in liver enzymes. I have that now, a chemo-induced hepatitis if you will, that we are having to watch. It may be the dark horse that stops me from taking this drug at some point even if I want to continue - and with that I am not sure. But to die from liver shutdown due to medication would be adding insult to injury. If that happened, I would be mad. So watch out! I am giving my hometown infusion center another try and will be a little more assertive than last time. Though I won't dismantle the bell - ha - I will wear half a patient safety hat and speak up if I see something that should be done, like the 30 minute post-chemo wait and so on. I didn't last time. I know. It's a southern thing that I push against often. I am on my last day at the OBX and am nostalgic as always. I love it here and have taken advantage of the warmer weather and actually walked almost every day. I hear it snowed yesterday in Corning so I do need to mentally prepare myself to step back in to winter, at least for a while. I went over to my favorite restaurant this week with Mom, the one where I bartended during OBXMAS and saw one of the guys. He had talked to my closest bartender friend, the one who has been wintering it in the keys as a bartender. He is on his way back next week and sent me a message that I am bartending with him one night in May. My reputation precedes me! So, all in all a wonderful week. Beloved is here to carry me back north tomorrow on a jet plane. And NY life begins again.]]> 2114 0 0 0 412 0 0 413 0 0 414 0 1 Triple Negative Breast Cancer http://www.sherrifillipo.com/2015/03/25/triple-negative-breast-cancer/ Wed, 25 Mar 2015 14:41:10 +0000 http://www.sherrifillipo.com/?p=2147 triple negative

    Many posts ago, we talked about the various types of cancer. What I didn't talk about at the time was something called "triple negative" breast cancer. Today I want to explain what this is. Remember from before we discussed the three fueling agents for tumors: estrogen, progesterone and a protein called Her-2.  If you go on breast cancer websites or Facebook pages you will see women talk about their cancer using these three receptors:  ER PR and Her-2. They will then use + or - for each.  It is a shorthand if you will for those of us who live in this world and for caregivers who determine therapy by these three identifiers. For women who are negative for all three receptors, they are known as being "triple negative." So what does this mean? It means that the common treatments and hormonal therapies that work on the  women who have positive receptors will not work for these women. Chemo, however is still an option. According to the National Breast Cancer Foundation, 25% of breast cancers are triple negative. And interestingly it is more common in younger women, African Americans and Hispanics. Although there are many factors to consider,  triple negative breast cancer is considered more aggressive and the likelihood of spread and reoccurrence  is increased. There is a website dedicated to triple negative  breast cancer if you or a loved one is interested in more information.]]>     2147 0 0 0 438 0 0 427 0 0 428 http://Nowebsite 427 0 429 0 1     World's Oldest Evidence of Breast Cancer http://www.sherrifillipo.com/2015/03/26/worlds-oldest-evidence-of-breast-cancer/ Thu, 26 Mar 2015 19:26:58 +0000 http://www.sherrifillipo.com/?p=2155 reuters2

    CAIRO (Reuters) - A team from a Spanish university has discovered what Egyptian authorities are calling the world's oldest evidence of breast cancer in the 4,200-year-old skeleton of an adult woman. Antiquities Minister Mamdouh el-Damaty said the bones of the woman, who lived at the end of the 6th Pharaonic Dynasty, showed "an extraordinary deterioration". "The study of her remains shows the typical destructive damage provoked by the extension of a breast cancer as a metastasis," he said in a statement on Tuesday. Despite being one of the world's leading causes of death today, cancer is virtually absent in archaeological records compared to other diseases - which has given rise to the idea that cancers are mainly attributable to modern lifestyles and to people living for longer. But the finding, along with evidence reported last year by British researchers of metastatic cancer in a 3,000-year-old skeleton found in a tomb in modern Sudan, suggests cancer was around in the Nile Valley in ancient times. The anthropological team from the University of Jaen said the Egyptian woman was an aristocrat from Elephantine, the country's southernmost town. Her remains were discovered in the necropolis of Qubbet el-Hawa, west of the southern city of Aswan, the ministry said. According to the World Health Organization's cancer research agency, new cancer cases rose to an estimated 14 million a year in 2012, a figure seen rising to 22 million within 20 years. (Reporting by Mahmoud Mourad; editing by John Stonestreet)]]>     2155 0 0 0 434 0 0     Clear Your Desks: It's Time for a Pop Quiz http://www.sherrifillipo.com/2015/03/27/clear-your-desks-its-time-for-a-pop-quiz/ Fri, 27 Mar 2015 14:12:51 +0000 http://www.sherrifillipo.com/?p=2161 quizRemember when your teacher would say something like, "Take everything off your desks. We are going to have a pop quiz." My heart would start to race. I would wonder if I could remember anything....well today is a quiz. Self-graded. I ran across this as I was reading and thought it might bring home some points about cancer in general.  It is from NPR and WYNC. (This is not breast cancer specific.)  Good luck!

    The Cost of Cancer Quiz 

    ]]>     2161 0 0 0 430 0 0 431 0 1 433 0 0     What Breast Cancer Can Look and Feel Like: This is Thinking Outside the Box For Sure! http://www.sherrifillipo.com/2015/03/30/what-breast-can-look-and-feel-like-this-is-thinking-outside-the-box-for-sure/ Mon, 30 Mar 2015 15:04:17 +0000 http://www.sherrifillipo.com/?p=2169 As much as I love the concept of thinking outside the box, when I came upon this design I was so caught off guard I had to read it a couple of times. I have decided that I indeed applaud this designer's creative mind and believe it will help many people. What my immature mind is trying NOT to do is to begin thinking about lemonade jokes. I know. It's so immature...

    lemon3 lemon4]]>     2169 0 0 0 435 http://theasymmetryofmatter.wordpress.com 0 0 436 0 1 437 0 0     Metastatic Breast Cancer Network Follow-up Interview on Physician - Patient Relationship http://www.sherrifillipo.com/2015/03/31/metastatic-breast-cancer-network-follow-up-interview-on-physician-patient-relationship/ Tue, 31 Mar 2015 14:20:56 +0000 http://www.sherrifillipo.com/?p=2184 mbcn_buzzheader-1

     

    I received a third set of questions from this group related to physician - relationships. Click on the link below to see the answers.

    More Q&As about talking to one's oncologist, seeking a second opinion and patients' bill of rights.

    ]]>     2184 0 0 0 442 0 0 443 0 0     Oh The Many Uses of Barbed Wire http://www.sherrifillipo.com/2015/04/01/oh-the-many-uses-of-barbed-wire/ Wed, 01 Apr 2015 12:54:54 +0000 http://www.sherrifillipo.com/?p=2191 Close-up of old rusty twisted barbed wire.

    It's hard to have a Momma Monday when you no longer hear  from her as much. She has flown the coop and gone back to substitute teaching in her local school system.  I hate it as it really puts a hamper on getting good stuff out of her for the blog. Ha. But she is bound and determined to have some spending money so she can renovate their bonus room into a art studio. Well, not actually the lovely carpeted vaulted ceiling bonus room but the framed in attic adjacent to it - the unfinished, unheated, non-air-conditioned room. Why you might ask? Well, Pop continues to be confused too, "Why don't you use this lovely room?" Because Mom says she would have to rip out the carpet. Dad's response: "Why would anyone rip out perfectly good carpeting if you don't need to?" To which Mom responds, " I don't like the color beige, I never have and you simply don't know how messy  my art is going to get." Pop winks at me as he and I know perfectly well how her kitchen looks after she has gone in to make a meal or maybe simply to pour a cup of coffee. Have you seen that very dramatic commercial of the artist who paints with her hands and fingers flicking and swiping paint all over the canvas and at the end she turns the painting upside down and it is a tiger or tortoise? Well, that's Momma when she's cooking dinner. Granted, she is an excellent cook but holy cow watch out and wear goggles! Post-publishing note: Mom loves to edit and since she was not aware of these public service announcements, she asked if I would re-post and embed an example of both the commercial and how I liken her cooking methodology to this artist. My mother - forever my editor... https://youtu.be/ia8AdxgSVB8 So she says the attic "speaks to her" and I don't mean in that hallucinatory way but in that artistic way that mesmerizes. She says that every artist friend who has seen the photos of that space all agree that it speaks to them as well. Hence Mom going back into the trenches of public school teaching so she can design this space just to her liking...all of her energy now substituting except when she is in the yard pulling up those weeds, which I found her doing a couple of weeks ago when I called. Mom and Dad had decided to clear out the brush. 70+ years old both of them on a clear Saturday and they are out there ripping up rural Raleigh. Soon they got to some barbed wire that trees and underbrush had over taken and Pop went in to get loppers or clippers to free it from the clutches of the foliage. Mom continued to work and after while when they (I guess) had decided they had earned the right to stop and relax at the end of the day, Pop started gathering up the bits of barbed wire when Mom shouted out, "Jim. Where are you going?" To no one's surprise, he responded he was taking it all to the trash can. Her response? "You are taking that perfectly good barbed wire to the trash?  Come back." While Dad made drinks, Mom fashioned a wreath out of it, stuck a bird's nest in it and hung it on their front door. Only some of it she told me. She has tucked away a wad of it for her art projects once her studio is completed. It goes without saying but how could I make this stuff up?]]>     2191 0 0 0 444 0 0 445 0 1 446 0 0 447 446 1 463 0 0     Inflammatory Breast Cancer http://www.sherrifillipo.com/2015/04/02/inflammatory-breast-cancer/ Thu, 02 Apr 2015 14:46:23 +0000 http://www.sherrifillipo.com/?p=2208 Inflammatory Breast Cancer lemon3]]> 2208 0 0 0 451 0 0 Good Friday http://www.sherrifillipo.com/2015/04/03/good-friday/ Fri, 03 Apr 2015 14:46:36 +0000 http://www.sherrifillipo.com/?p=2212 Postage stamp Germany 1969 Crosses

    I remember a few months ago when I wrote the list of things I believed as a Christian. I wasn't prepared for the number of friends and family who spoke to me about that post. Though I have never been one to stand on the corner and evangelize, I don't think anyone who knew me was surprised with what I wrote. But I do have to admit that the diagnosis of terminal breast cancer has been freeing, like those folks who are 80+ years old and just speak their mind. And maybe that is why I thought it was a good time to lay it all out on the line. I really don't remember what sparked that post. Today though is Good Friday. The day when Jesus was nailed to the cross between two other men and died on that cross as the ultimate penalty for our sins. All of us and all of our sins. Do I really believe that? I absolutely do. I have had people turn to me in discussions and ask if the man on the cross who believed at the final hour would go to heaven. After all he had done. And my answer was and is, yes. Without a doubt. Christ said that He would see him later in paradise. I am getting around to my point in a longwinded way. It doesn't matter what you have done. It doesn't matter that you have never gone to church, have never uttered a prayer in your life. If you believe that Christ died on that cross oh so many years ago to save us all from our sins (wrongdoings) and arose again three days later - you will go to heaven. And you will see me there when you arrive. As Jewish law was written long ago, there was always a penalty to be paid for sin. It used to be animals. Christ, son of God, came in the flesh as the ultimate sacrifice to pay for your sins and mine (which are as countless as the stars). That is why I am at peace with this disease and this life. As today's devotion states:

    For our light and momentary troubles are achieving for us an eternal glory that outweighs them all. 2 Corinthians 4:17

    ]]>     2212 0 0 0 448 0 0 449 0 0 450 0 1 452 0 0 453 http://gravatar.com/pilgrim125 0 0 454 452 0 455 0 0     My Silver Girls Came Calling http://www.sherrifillipo.com/2015/04/06/my-silver-girls-came-calling/ Mon, 06 Apr 2015 13:15:29 +0000 http://www.sherrifillipo.com/?p=2218 silver girlsLast weekend, my silver girls (see previous post) came calling from Connecticut bearing gifts of cookies, champagne and the desire to sit and catch up. I love these women (along with the mom of one only because I don't know the mom of the other!)We hadn't seen each other in almost a year? But we picked right up as if no time had passed. I mean we do keep up through texts and emails and the occasional package that they spoil me with. A couple of weeks ago, the silver girl on the left and Beloved's former secretary sent me the cutest hedgehog magnet! They are always sending things that surprise and brighten my day. I had big plans to take them up to the finger lakes and show off my proud adopted land but they were content to sit amongst Beloved and the cats and just talk. My energy level agreed with that. They also teased me and said they had read enough about my mighty margaritas and basically told me to prove it or shut up! I can't get my mixer that I use at the OBX but thankfully I have discovered one that Wegmans has just started selling and used it. That's what you see us holding in the picture. A very tart margarita but we did pretty well getting them down! If I do say so myself. Later we went up to Tony's - the hangout on the corner. You know the one and ate prime rib and talked some more - downed it with a great bottle of red wine. Beloved just set back and watched us. He knows them both professionally and as friends. I watched him just smile at our crazy conversations. He knows catching up with Yale and New Haven news is very important to me and I lapped it up like a kitten to milk. They stayed at our only boutique hotel that is on the second floor of a restaurant. Let's put it this way: you pick up your hotel key from the bartender! The next day we went to the Corning Museum of Glass, an absolutely beautiful museum that sits behind my apartment. They just opened a new $100 million wing three weeks ago. The place is stunning. I know I am biased but if you find your way up here, you must go through it. Ancient glass, Asian glass, it goes on for miles. And the greatest largest gift shop known to man. They left Sunday morning all too soon. Time just flew by. I am blessed to have them in my family. My turn to get to New Haven. Beloved has promised me a trip in spring/summer. We will pour drinks again and start right back where we left off on Sunday. I am one blessed woman.]]> 2218 0 0 0 456 0 0 457 http://gravatar.com/lmd1008 456 0 465 0 0 My Son: Weeks Before Graduating! I am So Happy, So Scared http://www.sherrifillipo.com/2015/04/07/my-son-weeks-before-graduating-so-happy-so-scared/ Tue, 07 Apr 2015 12:48:56 +0000 http://www.sherrifillipo.com/?p=2228 intubation 2 I found myself in a very unusual place today. My son is completing his associate's degree in emergency medical services for which I am infinitely proud. He is my son who had detested school since kindergarten so much so that he got himself kicked out of within the first six weeks. He likes to pride himself on that as he will say, "Just how many people have you ever known to be KICKED OUT OF KINDERGARTEN?" It makes for good dinner party conversation but it still has grieved me so. A beautiful bright boy, now man, who has NEVER seen life the way we have. After the incident of being kicked out, I put him in a small, loving Quaker school for a couple of years until he no longer fit there and the school and I  agreed to part ways. He has his own drum, drummer and beat inside his head and he is happy to be marching along to it - whether it matches anybody else's  beat or not. We took some time off and I homeschooled him. It fit my philosophy and his lifestyle to a T but it was still back 10+ years ago when the support wasn't there for moms who found themselves in that situation. Fast forward to college. He had a few spits and splutters but is in line to graduate this May with a degree in Emergency Medical Services. I could lay my head down on this keyboard and weep for all the difficulties he and I have had through his schooling years. But we have  (almost) done it. What we have been burning the midnight oil on is the myriad of ways one applies for an EMT position in NC. Some are online, some are faxed, some you need to show up in person (that could be a couple of hours drive and then apply with pen and paper) and on it goes. I confess my faith falters. NOTHING has come easy for this child of 24. I am enormously proud of him. Today, he went in to the Operating Room to intubate which is part of his clinical requirements and one anesthesiologist whom I know told him he could not. The attending surgeon standing there urged him to go ahead (basically out ranking anesthesia). I am so proud to tell you he intubated a patient with ease and the surgeon told him aloud amidst a half dozen staff what a good job he had done under the pressure (meaning while the anesthesiologist stood there against the decision.) I know them both. I told my son if the surgeon told you that you did a good job, then you have arrived. I have never been prouder. That he did not crumble but stood his ground standing at the LOWEST point on an OR totem pole. And he succeeded. God bless my only child. After a full day in the OR, he walked across the street to apply for a full-time position with the hospital's ambulance service. When he had finished, he said his eyeballs were rolling back in their sockets. Which is his way of saying, 'I have had enough. I can't take anymore."  I told him a gold star was on his forehead and that he should relax for the rest of the day. Here is my private caveat: I can't let go of my grip of life until I can see him gainfully employed for the first time in his life. Would you pray that he can find a job, move out of his dad's house and start living as an adult? It weighs so heavily on me sometimes I don't know if it's the cancer I feel I am carrying or the burden I carry for him.]]> 2228 0 0 0 458 0 0 459 458 0 461 0 0 462 459 0 464 0 0 466 0 0 PET Scan and Summer Plans http://www.sherrifillipo.com/2015/04/09/pet-scan-and-summer-plans/ Thu, 09 Apr 2015 15:49:33 +0000 http://www.sherrifillipo.com/?p=2246 Wooden gone fishing sign, isolated on black background I don't know what it means when you wake yourself up snoring inside a PET scanner, either that the cancer has made you so fatigued that you will snatch a nap anywhere you can or that you have had so many scans, the inside of a scanner feels like home away from home. At any rate, that's exactly what happened yesterday. Twice. Oh brother. The results came in last night. Remember that my oncologist has reduced my chemo dosage by 2/3 as I couldn't tolerate the side effects. We scanned to see if the small dosage was 1) tolerable and 2) if it was capable of reducing the lesions. The answers: 1.) I don't find it tolerable and 2.) There is still one sizable  lesion on my liver. All's to say, I am done. At least for the summer. I just emailed my oncologist that I was taking a summer break from chemo and was headed for the beach. I am sure when she reads it, she will faint. I know her. But she has to understand that quality of life means different things to different people. And Beloved and I have decided I am going to spend most of my summer throwing caution to the wind and getting as dark as I want to. I am going to have nieces and nephews and any and all of my children coming and going as much as they please. I am going to gorge on shrimp and corn-on-the-cob and wear out my margarita shaker. So, I suddenly feel like a woman from the '70s who has just burned her bra and is feeling the freedom of rebellion. Come visit.]]> 2246 0 0 0 467 0 0 468 0 0 469 0 0 470 0 0 471 0 0 472 468 0 473 469 0 474 470 0 475 471 0 476 0 0 477 476 1 493 0 0 501 0 0 Lab Anyone? http://www.sherrifillipo.com/2015/04/10/lab-anyone/ Fri, 10 Apr 2015 14:24:37 +0000 http://www.sherrifillipo.com/?p=2252 black lab

    OK. Now I want a dog. I mean since I am headed to the OBX I think I need a DOG. What I want is an old Lab who will walk slowly with me and will give me that look of, "Have we walked enough yet?" To which I will respond, "Yes, love. We have."  And we will turn around and go back home. Can dogs ride in golf carts without falling out? I may have to google that. I mean I think I want a dog. I am much more of a cat person but I have always wanted a dog I could throw a ball to on the beach instead of high jacking everybody's else's dog I see. It's kind of pathetic. I try to woo their dog over to see if I can pet it or if I can have a turn at ball tossing.  It's like going up and trying to hold every baby that you see out somewhere. You have to be careful. No, I don't want the shedding or the drooling or the dependence. (They do remind me of boys.) But darn it, I really would like to have someone to walk with when Beloved is in NY. And next to a purring cat, there is nothing better than the sound of a thumping tail. Anyone know where I can find a sweet old Lab, well-behaved, trained on a leash (sounds like I am writing an ad for a dating website) who is low energy like me?]]>     2252 0 0 0 478 0 0 479 http://twitter.com/rengeko 478 0 480 http://www.facebook.com/765699947 0 0 481 480 0 482 0 0 483 0 0 484 478 1 486 483 1 485 479 1 487 482 1 488 480 1 489 478 1 490 0 0 491 0 0 492 0 0     Taming the Back 40 http://www.sherrifillipo.com/2015/04/13/taming-the-back-40/ Mon, 13 Apr 2015 13:23:46 +0000 http://www.sherrifillipo.com/?p=2258 Wheel loader machine unloading rocks So I called Mom on Friday to see what was up and I could tell she was outside. Surprise. "What are you doing?" I asked her. Well, she told me Dad had the week off and they had gone out to Lowe's and bought 1000 pounds of 'fake stone.'  I told her to hold on while I grabbed a pen as I felt a blog post was getting ready to unfold before me. "Well, you can write about this but it's fake stone." And I thought, what difference does that make but told her to keep going. " Well, it's temporary, at least  that is what I am telling Jim." "Momma, what in the world are you doing with 1000 pounds of stone?" "FAKE stone." "OK Momma, fake stone. What are you doing?" "Well, we are building a temporary fire pit in the back." Huh? "Mom, why? What for? Do you want to roast marshmallows?" "Well, I guess you could. But it will be big enough to roast a goat if you wanted to." Huh? "Jim wants to burn all that brush and all those logs. (Remember her chainsaw? Remember the barbed wire?) "Sherri, (as if she is explaining it to a five year old) we are trying to tame the back woods." "Mother, you and Dad are going to burn down the neighborhood." Then she stopped talking to me and started yelling out to Dad, "OK. Hold on a minute!" "Sherri, he needs me to help him navigate the truck down to the creek. I'll call you back. Go take a nap." She always tells me to go take a nap nearly every time she talks to me. I don't get it. She is 70+ getting ready to lay 1000 pounds of rock and she wants me to nap.  

    momma 2

    ]]>     2258 0 0 0 494 0 0 498 0 0     Three Wonderful Men in Corning http://www.sherrifillipo.com/2015/04/14/three-wonderful-men-in-corning/ Tue, 14 Apr 2015 18:14:47 +0000 http://www.sherrifillipo.com/?p=2277 D and J Dustin and my son[/caption] I have been told many times that I should serve on the Chamber of Commerce here because people claim  I am a cheerleader for all things Corning. But I can't help it. I have been loved greatly by so many since arriving to this town. Let me give you another example. For those of you who have been reading along for a while know that I am in love with my hairdresser. I have already posted once about him but I need to tell him, his partner and their boss, the owner of the salon, how much they mean to me. I was six months into my new home in Corning when cancer came calling again if you remember.  I stumbled into a hair salon, AJ's, and unbeknownst to me, started a lifetime friendship with these three men. Dustin has seen me through chemo twice and has shaved my head. He has seen me cry over  a handful of chemo-fried hair and on more than one occasion, he has joined me in tearful grief. I met his partner many months later and fell in love with him right away as well. Between these three men they have man-handled my chemo frizz, cut it, razored it, coaxed it, cursed it but not once given up on it - long after I had. You see, these men hold women who have breast cancer, in what I think, is high esteem. It is quite humbling what they are willing to do to make chemo, post-chemo and cancer as manageable as they can for those who are suffering. Yesterday, I went in to have my curls straightened as I am headed to the OBX and for those of you in the south you know what summer weather does to hair. Dustin was very patient in his client education (if only all nurses were this thorough during patient teaching) explaining that with chemo still in my hair strands, there is no certainty what we will come out with - it might decide to curl right up again or not. We both agreed that we were  ready for the adventure and 30 minutes later as he was blowing my lovely straight locks he said, "Oh Miss Sherri! Can you feel how silky smooth your hair is?" Grinning from ear to ear as he flicked that blow dryer back and forth, "You look marvelous!" I am old enough to be his mother and I don't care! I eat it up. When you are 54, you will take any compliment you can get. He, his partner and the owner of the salon are the kindest, most warm-hearted three men I have ever known. Having them here in this small town comforts me. When I worried yesterday that I might have a hard time getting an appointment in June, Dustin grinned (he has the loveliest smile) "Oh Miss Sherri. I work between two guys. One says anything you want done inside this salon, to give it to you. The other says anything you want or need in the community  he will make sure you get it." It's hard not to feel like royalty amidst all this love.]]> 2277 0 0 0 495 0 0 499 0 0 503 0 0 Ending Treatment: A Discussion With My Beloved Oncologist http://www.sherrifillipo.com/2015/04/16/ending-treatment-a-discussion-with-my-beloved-oncologist/ Thu, 16 Apr 2015 13:06:04 +0000 http://www.sherrifillipo.com/?p=2288 North Head Lighthouse at dusk

    I had a face-to-face discussion on Tuesday with my dear physician. Let's just say I was too choked up to write about it until now. I can't describe how sad we both were. She is so genuine and so lovely and so kind. I tell you, I kept patting her knee telling her it was ok. When we both started crying, she jumped up to find a tissue box but alas there was none so there we sat crying into paper towels. Not a tissue to be found in that exam room. What I told her is what I told you several blogs back -  that I was going to the beach and living without the shackles of cancer for the summer. No treatment, no scheduling my trip around chemo days. I was just going to give myself and my family all of my time and my energy. If the reduced chemo had been kinder to me, I might not have come to such conclusions but it hasn't been. She said that she knew I understood what I was doing but she articulated it anyway:  the cancer would progress. I confirmed to her that I knew. What surprised me was that she said that she didn't have anything else to offer that wouldn't give me the same issues that I have been dealing with and that's when it hit me just exactly what I had done. I had closed the door. We just looked at each other and started crying again. She said, "I try to at least leave the room before I let a tear fall." I told her I was fine with her crying in front of me, that her genuiness  was what was so lovely about her. At the end of the discussion, she asked if she could pray with me. She took my hands, patient and physician, we prayed and cried. We hugged and said good-bye.]]>     2288 0 0 0 529 https://www.facebook.com/ginny.knackmuhs 0 0 504 http://sherrifillipo.com 0 0 505 0 0 506 0 0 507 http://www.facebook.com/100002264834367 0 0 508 507 0 509 0 0 510 http://morethancancer.wordpress.com 0 0 511 510 1 512 509 1 514 http://metastaticmadness.wordpress.com 0 0 515 http://joyceblogarama.wordpress.com 0 0 516 514 0 517 515 0 518 0 0 519 http://theasymmetryofmatter.wordpress.com 0 0 520 518 1 521 519 1 522 506 1 523 0 0 524 0 0 525 0 0 526 523 1 527 524 1 528 525 1 531 http://Inspire 0 0 532 0 0 533 http://thesmallc.wordpress.com 0 0 534 533 0 535 531 0 536 532 0 539 0 0 540 0 0 541 http://www.kristenstruewillpower.com/ 0 0 556 541 1 562 0 0 563 0 0     Rita, Rita, Rita http://www.sherrifillipo.com/2015/04/14/rita-rita-rita/ Wed, 15 Apr 2015 03:49:44 +0000 http://www.sherrifillipo.com/?p=2290 breastcancer.org, "Lobular means that the cancer began in the milk-producing lobules (lobular carcinoma), which empty out into the ducts (ductal carcinoma)  that carry milk to the nipple. About 10% of all invasive breast cancers are invasive lobular carcinomas. (About 80% are invasive ductal carcinomas.)" Diagram of breast cancer Here is where it gets sticky for me: 1. Wilson stated that she expects to make a full recovery 'because we caught it early.' Where have we heard that before? Mine was caught early and it is not saving me. 2. She urged women to get second opinions as this is what saved her (see #1). While it is within every woman's right to have a second opinion, it is also wise to speak with your insurance company to confirm that they will pay for a second opinion before you move ahead. According to The Patient Advocate Foundation, Medicare will pay for 80% of the cost. Just remember that a second opinion might involve additional blood work or tests that may or may not be covered. 3. Remember Joan Lunden stating she was going beat this disease? Rita Wilson no more knows if she will beat it than Joan does.

    Remember, it's the cancer that decides who will beat it, not  the celebrity.

    ]]>     2290 0 0 0 496 0 0 500 0 0 502 http://metastaticmadness.wordpress.com 0 0     The Corning "Herald" http://www.sherrifillipo.com/2015/04/17/the-corning-herald/ Fri, 17 Apr 2015 12:22:06 +0000 http://www.sherrifillipo.com/?p=2303 Bicycle sign

    Maybe it's the terminal disease that has made me schmaltzy. I don't know but here I go again. For those of you not on chemo, let me tell you it can really do a number on your body in ways you couldn't even expect. Some chemos make your nose run for no reason. Yes, I am one of those women who stuffs kleenix up her sleeve as my nose runs like the proverbial faucet. The chemo that I have been on also tears up my fingernails and toenails. My fingers and toes minding their own business get hit with the chemo as well. Doesn't seem fair but cancer is not fair. So when I go and get a pedicure, I feel it is medical management. Well, at least that's what I tell Beloved. So today I went to have my feet scrubbed and painted for spring. And this is, again what I love about Corning. We have an older, diminutive gentleman whom I will call Timmy who is challenged in many ways. But he has a job and he does it well in Corning. He is an ambassador (kind of like me but I don't have the spiffy bicycle that he does). Timmy spends his days riding up and down Market Street, our main street through town. He is akin to being a herald - especially if there has been a fire or police chase in the area. Everyone knows him and if you are having lunch somewhere, he might walk in (always wearing his helmet which is more than I can say for my son!) and will greet each customer individually. Whether you are a local or tourist, he does not care. You will get a wave. I find it difficult to understand much of what he says but I have witnessed many local folks who carry on a conversation with him. Like today for instance. I was sitting with my feet in a tub of water when Timmy walked in, helmet on, yellow jacket zipped up and he was excited. One woman looked up and said, "Hey Timmy." And Timmy went on about something that I couldn't quite hear. As he made his way down the aisle of women getting pedis and manis, people would greet him. When I waved and said, "Hey Timmy." He started telling me about something with the word four in it. I tried to interpret what he was saying and most times I am pretty good with accents or impediments but not with him. So he worked his way down to the last woman. "Hey Timmy." She called out and then he began his story. I heard her say, "You don't say.  A fire down on 4th street?" She was catching it all and you could see the relief in his eyes that FINALLY someone he could talk to. He was so relieved, he sat down in the pedicure chair beside her, helmet and all and described (I guess) what he had witnessed this morning. When he had finally gotten the story out, he walked back to the front where the first woman said, "Timmy. You should visit my mother sometime soon." Timmy nodded and left  the store jumping on his bike to wait for the next exciting moment in Corning. I overheard the lady say that Timmy lives with a relative next door to her mom. Only in Corning. Timmy comes in, four women know him by name and a grin never leaves his face.  ]]>     2303 0 0 0 530 0 0 537 http://theasymmetryofmatter.wordpress.com 0 0 538 537 1     Momma's Bed and Breakfast http://www.sherrifillipo.com/2015/04/20/mommas-bed-and-breakfast/ Mon, 20 Apr 2015 15:07:40 +0000 http://www.sherrifillipo.com/?p=2315 fire pit

    My mother is nothing if not a good sport, as is my dad. Due to an illness in our family, my parents spent the weekend taking care of my cousin's three children ages around 7, 9, and 11. On Friday night while I was eating pizza and having a gin and tonic, Mom texted me to tell me the youngest, a girl, was standing in the chair where my dad was trying to watch TV and was rubbing his bald head around and around in circles all the while yelling out to my mother, "Hey, Uncle Jane!" Saturday morning  I heard Dad made them pancakes with strawberries on top and later that afternoon, I called to make sure the kids had not tied my parents up with rope like in an old sitcom, when Momma said they were outside at........................the fire pit. You know the one, the one with the fake stone? "Mom, what are you doing out there with three kids circling the fire?" "Oh, I moved. I'm not near them. You dad is. But I can see them." It made me break out into a nervous sweat 600 miles away. "Mom, what are you doing with them at the pit?" "Oh, we're going to cook hotdogs out here for dinner." Being a bit sarcastic,  I asked her would there be marshmallows too? "Oh, yes. Your dad is going up to the store in a minute to get some." Of course he is. He is one good sport. As is she. I urged her to go back there and help him herd those kids and she reminded me in no uncertain terms that she was a retired public school teacher with 30 years of experience under her belt and she could handle it. "Hey, put those leaves down! You are going start a fire....now what were we saying?" Sunday morning, she left me a message that all was well. That after dinner  last night, they found a deer track near the creek and they had mixed up some plaster to make a mold of the track. The middle boy was cleaning the dirt off of it and everyone had had a good time. Of course they had. Who wouldn't? At Momma's B&B.]]>     2315 0 0 0 543 0 0 544 0 1 560 0 0     Clarification to New Followers http://www.sherrifillipo.com/2015/04/20/clarification-to-new-followers/ Mon, 20 Apr 2015 15:22:54 +0000 http://www.sherrifillipo.com/?p=2323 Although about once a week, I try to lighten my blog with antics from my mother or other stray items that catch my attention, my real purpose for blogging is to educate and share the real truths about Stage IV or metastatic breast cancer. It might be the nurse in me but I cannot stand all of the misinformation out there about this disease nor the number of celebrities who by virtue of their status are suddenly breast cancer experts. So, I try to write Mondays through Fridays and though some  (like this morning) are tributes to my mother who tickles me and keeps me  charging forward, my terminal illness is never far from my mind nor the minds of my friends and families. This beautifully done poster sums if up for me:

     

    mets

    ]]>     2323 0 0 0 545 0 0 546 0 0 547 546 1 548 0 0 549 http://desdaughter2.wordpress.com 547 0 550 549 1 551 549 1 552 548 1 553 0 0     The Latest on Mammography: Breast Screening Draft Recommendations http://www.sherrifillipo.com/2015/04/21/the-latest-on-mammography-breast-screening-draft-recommendations/ Tue, 21 Apr 2015 14:04:29 +0000 http://www.sherrifillipo.com/?p=2330 screeningforbreastcancer.org will no doubt leave some of you upset as the current national belief related to mammography borders on them being life preservers and who wouldn't throw out a life preserver to a woman in need? But as time marches on, researchers, physicians and the public are learning not only about the pros of having mammography but also the cons of having the screening. You have to understand that indeed there are cons. And for many women that is a step that they cannot take. It is counter-intuitive for many.  It is as if we as Americans have had it drummed into our brains that "more is better" whatever we are talking about. Therefore more mammograms, more often must be the safest thing to do.  It just simply is not true. The video below is about seven minutes and while not dramatic or riveting (no dogs doing cute tricks, no wild car chases) the information that this researcher is providing is what we as a nation needs to hear even if we don't want to. Do you remember recently when Amy Robach from Good Morning America said a mammogram saved her life when they discovered a lump? And the world shook its collective head and said, "See, we told you!" I am telling you as difficult as it sounds, that it isn't that black and white. I blogged about her when she went public and have placed the link here if you want to read it Mammography, What I Bet You Didn't Know. https://youtu.be/3FXBCa6tIDg?t=409]]> 2330 0 0 0 554 http://gravatar.com/joenkristen 0 0 555 http://gravatar.com/joenkristen 554 0 557 555 1 A Short Break for Me http://www.sherrifillipo.com/2015/04/22/a-short-break-for-me/ Wed, 22 Apr 2015 08:00:57 +0000 http://www.sherrifillipo.com/?p=2337 Blue beach ocean palm trees background I am taking a short break and finding some surf and sea - not in my usual location. I will see you on Monday, April 27. I am going to pray, think, reflect and write draft blogs. See you Monday! Friends will be tending the home fires and caring for the cats....]]> 2337 0 0 0 558 0 0 559 http://gravatar.com/raslesa 558 0 561 0 0 The Conversation: Part II http://www.sherrifillipo.com/2015/04/27/the-conversation-part-ii/ Mon, 27 Apr 2015 13:26:02 +0000 http://www.sherrifillipo.com/?p=2348

     

    Cross on Bible

    So much has happened since I took my  respite last week as someone called it. If you remember from about a month ago, I told you of three family members dealing with new diagnoses of cancer (the post entitled The Four of Us)  and it is with a heavy heart that I tell you that one of my uncles who was just diagnosed a month ago is now in hospice. Just like that. From working all over the world until last month when he got a bit confused; then a steady and rapid decline since March. So while I floated around in the warm waters of Naples, Florida my heart would almost sink me from the heaviness I felt for him, my aunt, and my two cousins (their children). Unlike me, they have not had nearly enough time, in my opinion, to sit and say all they wanted to say. Remember "the conversation" I posted recently about how important it is to have those tough conversations prior to something catastrophic happening? I am not saying that my family members have or have not had them but what I know is that I saw my uncle looking healthy at  my elderly uncle's 90th party  (remember the blog about the cute WWII guys) that would have been late January, his diagnosis in March and under hospice care in April. The good thing? My uncle and his entire family have a strong faith and no one in his family will question his eternal home. For the last three days I have splashed tears. In the pool. In the airport. In restaurants. For him. For me. For our families. I feel under the circumstances, I must preach this message again to all that read this blog. Whether you are sick like me or not. Start having those conversations about what is important to you in your life. What you would and wouldn't want to happen to you if you suddenly got confused driving to work and found yourself in the hospital with a terminal illness. That quick. In the blink of an eye. If you don't think you can do it without someone facilitating, find a therapist or social worker or someone who can sit with you and a couple of family members and rough draft those things that you  want done, the way you want them done. Remember the book I quoted from recently entitled The Conversation. In it Dr. Volandes said, [pullquote]"80% of Americans want to [die] at home with family and friends free from the institutional grip of hospitals [/pullquote]  "80% of Americans want to [die] at home with family and friends free from the institutional grip of hospitals and nursing homes and in relative comfort. However only 24% older than 65 die at home; 63% die in hospitals or nursing homes, sometimes tethered to machines and often in pain......the discrepancy is largely due to failure of doctors having discussions with patients about how to live life's final chapter. "]]>     2348 0 0 0 564 0 0 565 0 0 566 565 0 567 0 0 568 567 1 569 0 0 602 http:// 0 0     Again, Angels When You Least Expect Them http://www.sherrifillipo.com/2015/04/28/again-angels-when-you-least-expect-them/ Tue, 28 Apr 2015 08:17:03 +0000 http://www.sherrifillipo.com/?p=2364 angel in the sky Do you see the angel?[/caption]   I spent most of my time in Florida at the pool. I have always been a pool rat and could sun, swim and read all day. And that's exactly what Beloved let me do. On Saturday when we were going up to have lunch, I noticed the hotel had set up a massage chair near the pool and I walked over to inquire about the cost. Come to find out they were free 10 minute massages! I signed up on the spot. When I was seated, I told the gentleman that due to a childhood spinal fusion, my neck and shoulders were like bricks. He laughed and then later acknowledged that I was right. A few minutes later, he asked where I was from and I told him upstate New York. He was from Buffalo. He said he knew what a cold winter was all about and then inquired what I did in Corning. I told him not much and then got a wee bit teary. Out of nowhere. I told him I was a full-time patient with breast cancer. And then blurted out that it was terminal. Before I knew it, do you know what he did? He cupped his hand to my ear and whispered, "Sherri, God is in control." I was amazed. I told him indeed He was. We finished our time together. My neck felt so much better. When I stood up, he looked at me and said, "I will see you there [heaven]" and gave me the most beautiful smile ever. I started dropping tears and he hugged me. I walked away and thought, I didn't see that angel coming.]]> 2364 0 0 0 570 0 0 571 http://Inspire.com 0 0 572 0 0 573 0 0 574 0 0 575 0 0 576 http:// 0 0 582 0 0 583 0 0 1201 0 0 An Old Adage: Don't Believe Everything You See (or read) http://www.sherrifillipo.com/2015/05/20/an-old-adage-dont-believe-everything-you-see-or-read/ Wed, 20 May 2015 12:54:26 +0000 http://www.sherrifillipo.com/?p=2336 Belle Gibson Wellness Blogger Belle Gibson
    Wellness Blogger[/caption] I was made aware of this article from The Australian a few weeks ago and decided I needed to share it with you for a variety of reasons. First of all, I think we should all be very careful whether we are the sick ones or we are trying to help those of us who are sick with advice on what we should eat, drink, do, not do etc. I am a member of a closed group on Facebook of advanced cancer patients and you would be amazed at what has been suggested we eat, inject, drink and so on by well meaning friends. Lemon with baking soda seems to be all the rage (ugh). But also there are women who are trying to scam the good hearted out there with fund raisers and there are several who have made thousands upon thousands of dollars fraudulently. So I will probably sound like your mother but please dispense advice sparingly and give your money wisely. I can't imagine using this horrible disease for ill gain but it's out there. I mean, look at this sweet girl's face. Would you for a second suspect her of lying? Disgraced wellness blogger, Belle Gibson, has confessed that she lied about having cancer and curing her illness with a regime of healthy eating and natural therapies. Ms Gibson launched The Whole Pantry as a “lifestyle and wellness” app in 2013 after claiming in her blog to have survived an aggressive malignant brain tumour using only natural foods and alternative therapies. She also later claimed to be suffering cancers in her liver, spleen, uterus and blood. But after months of scrutiny of her story, including by The Australian, the 23-year-old has come clean. In an interview with The Australian Women’s Weekly, Ms Gibson was asked if she had, or ever had cancer. “No. None of it’s true,” she told the magazine. “I don’t want forgiveness,” she told The Weekly which describes her as “the girl who conned us all’’. “I just think [speaking out] was the responsible thing to do. Above anything, I would like people to say, ‘Okay, she’s human.’”
    Belle Gibson, founder of The Whole Pantry app.

    Belle Gibson, founder of The Whole Pantry app. Source: News Corp Australia

    In March, Ms Gibson, whose story of miraculous survival from terminal cancer helped launch her global “health and wellness” business, admitted that her claim of suffering multiple life-threatening cancers may be false. Gibson said her announcement last year that she was suffering from cancer of the liver, uterus, spleen and blood was based on a “misdiagnosis” by a doctor she won’t name. “It’s hard to admit that maybe you were wrong,” she said, adding that she felt “confused, bordering on humiliated”. But last month, Gibson was still standing by her claim that she has used alternative therapies to survive an aggressive malignant brain tumour for five years without any conventional medical treatment. An investigation by The Australian uncovered a series of unusual and contradictory medical claims by Gibson dating from May 2009, when she claimed to have undergone multiple heart surgery operations and momentarily died on an operating table. Gibson had also stated that in July that same year, when she was 20, a doctor told her she had terminal brain cancer and would be dead in four months. But according to the birth date on her own corporate filings, she was 17 at the time. Ms Gibson’s Australian publisher, Lantern, confirmed that it had never asked for documentary verification of her medical condition or her age before publishing her book The Whole Pantry in October. Ms Gibson told The Weekly although she was passionate about avoiding gluten, dairy and coffee, she didn’t really understand how cancer works. The magazine, which goes on sale tomorrow, said that it made no payment for the interview.]]>     2336 0 0 0 648 0 0 649 0 0     Maintaining Focus http://www.sherrifillipo.com/2015/04/29/maintaining-focus/ Wed, 29 Apr 2015 13:00:32 +0000 http://www.sherrifillipo.com/?p=2371 ballet

    I must say between my uncle's decline, my son pushing through his last few weeks of school and me trying to pack a summer's worth of things to drive to NC (alone) my faith has really been put to the test. And I will be the first one to tell you, lest Beloved beat me to the punch, that I have not done such a swift job in the last few days. You see, I like things done on my schedule and for the most part in an orderly fashion. And when things go like that, I can be pretty nice. But I feel like I have been in a blender even though I just got back from four lovely days in sunny Florida. And sometimes when I have to put my faith into action,  I can lose it. And it humbles me. It reminds me that I am NOT "all that and a bag of chips" as the kids say. I am irritable and stressed out and if I could, I would leap right out of my skin and it makes me crazy that I can't get a grip under my own power. Do I slow down and "be still" as the scripture says? Oh no. I have too much to do. (Please. That sounds so stupid but that's internally how I am feeling.) But late today, I remembered something I read this week about a ballerina. From the devotional I keep quoting Sarah Young , the author, reminded me, "Just as a spinning ballerina must keep returning her eyes to a given point to maintain her balance, so you must keep returning your focus to [Christ]." And it dawned on me. I had been doing just the opposite and that's why I have been so dizzy and out of control.]]>     2371 0 0 0 577 0 0 578 577 0 579 0 0 580 0 0 581 0 0     My Uncle and Hospice Care http://www.sherrifillipo.com/2015/05/05/my-uncle-and-hospice-care/ Tue, 05 May 2015 19:33:38 +0000 http://www.sherrifillipo.com/?p=2380 heaven gateIt has been so long since I have blogged that some of you thought I was sick..or worse.  But I am fine. I got word a week ago that my uncle who had been diagnosed with metastatic cancer five weeks ago had begun to decline rapidly. He was placed in hospice a week ago Friday. Beloved packed my car for the summer beach trip a week early and I drove 10 hours last Tuesday to NC, staying with one of my golden girls. The next day I drove two more hours to Charlotte, NC where my uncle was spending his last few days. I arrived around lunch and when I went in, my cousin said, "Dad, Sherri is here." And he opened up his eyes. I walked over and said hello. He had been in and out of consciousness for three days but he smiled at me and barely whispered, "Hey, Sherri." I wouldn't give a million dollars for that smile as his sons told me he had only smiled twice since he had arrived. I told him I loved him and he echoed the sentiment. I spent the afternoon with him. My aunt and cousins left for awhile to regroup. And so I sat and watched and prayed and wondered, "So, this is what it might be like [in hospice care.] Let me tell you what I saw:
    • The nursing assistant came in and lovingly talked to him asking him if he wanted his mouth cleaned. She swabbed his mouth and put balm on his lips. The way she looked into his eyes was profound.
    • The social worker came in and we talked about me for a half hour because my aunt whom she came to see wasn't there. This woman is so gifted in what she does. I was immediately attracted to her and thought how fortunate they were to have her.
    • Later an elderly African-American gentleman quietly knocked and came in wearing his special forces cap at a jaunty angle. He was a volunteer who came to see every veteran. He gave me useful information that I passed on to my aunt.
    • Two nurses came in to change him and reposition him and again, they worked with such grace.
    I left that evening so at peace with where he was and so impressed with the facility and its staff. I drove back to Golden Girl's house happy, sad and exhausted. My uncle died the next morning. I had made it just in time.]]>     2380 0 0 0 584 0 0 585 0 0 586 585 0 587 http://joycelilleston.wordpress.com 0 0 589 0 0     At Long Last: My Son Graduated Last Night http://www.sherrifillipo.com/2015/05/07/at-long-last-my-son-graduated-last-night/ Thu, 07 May 2015 15:02:37 +0000 http://www.sherrifillipo.com/?p=2385 jim 2015 In the midst of my uncle dying and all the family conversations and things that need to be done, my son  graduated from EMS/Paramedic training last night.  Oh the prayers that have been launched from my living room and the homes of people from around the country. As we were driving around last Wednesday, he nonchalantly said, "Well, I don't guess that this can be a surprise but  I want you to pin me Wednesday night at our ceremony." I dissolved into a puddle of tears. I told him I would be honored. I was floored. We have come so far. You have no idea. And sentimental man that he is, he asked if I could pick up flowers that he wanted to give to one of this professors as a thank you gift for maneuvering him through this difficult program and the process. He told me that he needed to write a card for if that would say, something to the effect, "I would have picked you the entire garden, but I couldn't afford it." That is my son to a  T. He is my only child and I am so happy I am still alive to see this program come to fruition. Thanks be to God.]]> 2385 0 0 0 595 0 0 596 0 0 597 0 0 598 0 0 599 0 0 607 0 0 608 607 1 Ty My Delivery Guy http://www.sherrifillipo.com/2015/05/06/ty-my-delivery-guy/ Wed, 06 May 2015 15:19:43 +0000 http://www.sherrifillipo.com/?p=2390 curtain side van The next day I was in Greensboro, NC meeting my son who was finishing up his last oral exam prior to being officially finished with his college degree. The campus is a bit rambly and I got as close as I could but was nowhere near him. I spotted an employee in a delivery van and stepped out to ask him for directions. Let me add parenthetically to say that all of this racial unrest has left me sad and unsettled and sometimes I feel like I need to tell African Americans that I wouldn't hurt them and that their lives matter and anything else I thought I could say to balm the injustices. That was a major digression. But it leads to a point. The young man that got out of the delivery van was a tall heavy built African American fellow - early 20's? I asked him if I was anywhere near the Emergency Medicine Building. He gave me a broad smile and told me I was nowhere near. Then he said, "Follow me." And I did. We wound around the campus and he dropped me off at a non-descript building and got out talking on his walkie-talkie. He looked at me and said, "They tell me it is on the second floor." I thanked him profusely and then got this idea. I had read about this in a book a long time ago but had never put it into place. The thought was if you go up to any one and ask them if you could pray for them, no one would say no. And I got the strongest push to do that to this young man. So I said, "I wish I could pay you for helping get through the campus. But you know what? Is there anything in your life that I could pray for?" His eyes widened and he turned his head to the side. Then he looked down at me (he was a big guy) and said, "Would you pray for my future?" I told him absolutely. I asked him if he wanted me to do it right then or later. He said, "Later." And then he walked over to his van. He turned back and said, "My name is Ty. Please don't forget to pray." I couldn't forget. I plan to pray for this young man forever. He smiled and drove away.]]> 2390 0 0 0 588 0 0 590 0 0 591 0 0 592 0 0 593 0 0 594 http://joycelilleston.wordpress.com 0 0 600 0 0 Five Things Not To Say To Women Who Have Had Mastectomies: Click On Link Below Picture http://www.sherrifillipo.com/2015/05/08/five-things-not-to-say-to-women-who-have-had-mastectomies-click-on-link-below-picture/ Fri, 08 May 2015 13:51:44 +0000 http://www.sherrifillipo.com/?p=2398 mets  

    Five things not to say to women who have had mastectomies

     ]]>     2398 0 0 0     No Time for a Blood Clot http://www.sherrifillipo.com/2015/05/08/no-time-for-a-blood-clot/ Fri, 08 May 2015 17:19:12 +0000 http://www.sherrifillipo.com/?p=2404 Yours truly and one of my Golden Girls Yours truly and one of my Golden Girls[/caption] Between the funeral on Monday and my son's pinning on Wednesday night, I decided the one thing I hadn't done in a while was go to the Emergency Department. After spending a full day between the two events, I was driving back to 'Golden Girl's' house and got the worst pain in my calf that I have ever had. Not a cramp but a deeper pain. And it was consistent. Just great. She and I are both nurses and as nurses we tend toward the worst case scenario which would be a blood clot in my calf from driving 20+ hours over the past three days. We consulted Beloved and we all decided to sleep on it. The next morning we all decided I should go to the ED. Golden Girl and I worked at this hospital for decades. I, however, never thought I would see it again. The place basically raised me. It was a tearful reunion. We saw so many people we knew especially her since she was an ED nurse for a few years. Long story short, I did not have a clot. We ended up with a whale of a reunion.]]> 2404 0 0 0 603 0 0 604 603 0 605 604 0 606 0 0 Settling in at the OBX http://www.sherrifillipo.com/2015/05/13/settling-in-at-the-obx/ Wed, 13 May 2015 14:02:46 +0000 http://www.sherrifillipo.com/?p=2410 www.obx.org www.obx.org[/caption] I am sitting here sipping coffee looking around and marveling all that has transpired in the last fifteen days. And it was a humbling reminder that I am not in control of much. Between the funeral and the graduation, my hard drive crashed and at the time, I thought, "Really?" But with so much going on, it was just another annoyance to be dealt with later. I did manage to buy a smaller laptop which I thought was wise since my strength and agility are decreasing. I set it up last evening on the kitchen bar so I would be ready to pound out something pithy this morning -ha. But, no. It is not picking up our wifi here so I am working off my iPad which is never relaxing for me to do. I am baby boomer enough that I like to feel the key pads underneath my fingertips when I type. Speaking of writing, I confess I like a little paper in my life as well. It is good for scratching out notes or to do's when you no longer can keep anything in your spongiform head. So that's a lot of nothing for today. My former co-worker is on his 30 mile trip up Highway 12 (he lives at the southern tip of the island, I live at the northern tip.) He is unloading my car but word has it, he is bringing one of his dogs to visit me. If you never hear from me again, it is because I was charged with dognapping.]]> 2410 0 0 0 612 http://cancerqueen.me 0 0 613 0 0 614 613 1 615 0 0 616 0 0 617 616 1 618 0 0 619 618 0 636 0 0 639 636 1 Zero, My Hero http://www.sherrifillipo.com/2015/05/11/zero-my-hero/ Mon, 11 May 2015 12:45:40 +0000 http://www.sherrifillipo.com/?p=2411 British Shorthair cat portrait on a white backgroundI want to go back to last week, the sad week in which my uncle died. This time my angel was a cat. Let me explain. Remember I had driven 10 hours a week early so I could spend a last few minutes with my uncle who was quickly dying of cancer. In the hustle and bustle of getting me to NC and my family all pulling together, we had not ordered flowers for the funeral. Late last Friday night my mom and I looked up at one another and realized it. We googled around and found a florist very close to the church where the service was to take place. We made our online purchase and specified that we needed them delivered to the church by 9:30 that Monday morning. The order was accepted and we moved on with weekend plans. On Sunday morning we got the strangest call. It was from the florist. He had come in to the florist to feed his cat, Zero, who lives at the florist shop and noticed an order on the computer. It was ours. He said he would stay that day to make the arrangement but would need our assistance in getting the flowers to the church. He remarked, "I don't come by every weekend but did stop to feed Zero. Thankfully I did." Oh how I agreed. I imagined what we would have done if we had assumed the flowers were going to be at the church. We would have gone up to mingle with our family, would have looked to make sure the flowers were there. They wouldn't have been. And we would have been too emotional and too confused to understand why. AND too late to do anything about it. That ole Zero. Though I never met him. He saved the day. Angels I guess come in all shapes and sizes AND breeds...]]> 2411 0 0 0 611 http://www.facebook.com/100000119163390 0 0 645 0 0 Headed to the OBX http://www.sherrifillipo.com/2015/05/12/headed-to-the-obx/ Tue, 12 May 2015 12:47:46 +0000 http://www.sherrifillipo.com/?p=2418 I just sent my son off to his first official interview, dressed in a new handsome blue suit that my Dad decided he needed. He may be the only EMT dressed in a suit but he will be the best looking one there! He and I have been staying with my mom and dad since our uncle's funeral a week ago. A multi-generational family for a few days. It was rather nice. I imagined how it might be as it once was, a common rather than unusual way to live. We all cooked together, had cocktails on the back porch and watched the birds eat and the deer tip toe through the woods thinking that we did not see them. Beloved flew in for a quick Mother's Day visit and my sister drove in from Winston-Salem that day as well. We all went to an old classic steak house that I had never been to and had mentioned once. My dad was determined to "check that one off the bucket list." It seems that everyone has items on my list and are working to see them to fruition. I find that so endearing. Today marks the first day I have been alone in 15 days. For a woman who is used to being alone during the days surrounded by her two cats (that does sound so pitiful and odd) I have done more, driven more, talked more than I have in a year. My body and mind are worn out. I am within an hour of driving to the OBX and taking a long walk on the beach to unwind and sort things through. One of my colleagues from my years at Cone Hospital is meeting me tomorrow to unload my car for me. And afterward we are going across the street for lunch. I think I can safely say that summer has started for me.]]> 2418 0 0 0 609 0 0 610 http://gravatar.com/sherrifillipo 609 0 637 0 0 Someone Following Me http://www.sherrifillipo.com/2015/05/14/someone-following-me/ Thu, 14 May 2015 14:31:53 +0000 http://www.sherrifillipo.com/?p=2423 imageAlthough I am not Catholic and know little to nothing about saints, I seem to have one following me wherever I go. Let me explain. He was first introduced to me by my mother's neighbor one evening in a glass of champagne. And then last month when we spent those few days in Florida, someone made me a cucumber martini and again there he was swirling around in my glass with my gin. It was time to find out who this Saint Germaine guy was. It appears that he comes from France in the form of little white flowers called elder flowers. There is  a small window of availability for picking these and up into the Alps someone goes to get them. They are then macerated and turned into a liqueur that smells like grapefruit to me with a hint of something floral. So back to Raleigh last week where I took Mom, Dad, and my son to a graduation dinner and we had been talking about this liqueur. Well, quite frankly, we had been replicating the Florida drink for days....at the end of the meal, the waitress handed us the dessert menu and wouldn't you know it, the last item was a lemon tart with St. Germaine! We had to try it. Now as you know, I am at the OBX and was sitting here last evening just a bit blue and decided to walk over to "my" restaurant for a glass of wine and a little conversation. Both of my guys were there and I was so happy to see them. Although they handed me a menu I told them I was just there for a minute. About a half hour later, I looked down and guess who had followed to the beach? It was a gin julep- gin, ole St. Germaine, mint, cucumber and lime. Holy cow! I'm in love! And now I'm thinking I might need to name my imaginary dog after him!]]> 2423 0 0 0 620 0 0 621 0 0 622 621 1 623 0 0 624 622 0 625 0 0 626 0 0 635 0 0 The Circle of Life http://www.sherrifillipo.com/2015/05/15/the-circle-of-life/ Fri, 15 May 2015 21:30:23 +0000 http://www.sherrifillipo.com/?p=2430 Red fire truck with its full equipment Indulge me one more time about my uncle. He was a lover of fire trucks and fire stations although he was never a fireman. When he got confused five weeks ago and drove around Charlotte trying to find his way home or his way to work, I think it interesting that he stopped at a fire station.  Something in his brain, while it was swelling and causing him great confusion,  looked familiar when he noticed the fire house. Those men took quick vitals, knew something was wrong and rushed him to the hospital. God bless those men. We all know how it ended. Undiagnosed cancer from a never identified melanoma, metastatic to the lungs and on to the brain. He died five weeks from the day he drove up to the fire station. We had his funeral as you know a week ago and I believe I wrote that the family (all 20 of us from infant to 70+) ate at my uncle's favorite barbecue place as a tribute. While we were all there winding down and talking - many of us had not seen each other in several years -  a fire truck pulled up and several men got out at the restaurant to have their evening meal. We all looked at each other. From fire station to fire truck - our uncle was saying one last good-bye.]]> 2430 0 0 0 634 0 0 629 0 0 630 629 1 631 0 0 632 0 0 633 632 0 638 0 0 640 638 0 Last Thursday, a Great Day at the OBX http://www.sherrifillipo.com/2015/05/18/last-thursday-a-great-day-at-the-obx/ Mon, 18 May 2015 10:54:18 +0000 http://www.sherrifillipo.com/?p=2443 bicycle So though my friend did not bring up one of his dogs as I thought, we had a delightful afternoon sitting on my upper deck talking, reminiscing and sipping iced tea after helping me unload my car. I cannot tell you how much he unloaded. After the fourth eight-pack of toilet paper, he asked what in the world we planned to do this summer! I told him he didn't quite understand how large our combined families were and all of the coming and going that we anticipated this summer. He left later in the day and that night he emailed me and said he had read my blog belatedly and felt just awful about not bringing one of his dogs up to see me. I told him that he had all summer to do that. He then mentioned that he had two bikes that he would love to loan me if I thought I would like to use them. I envisioned this cool 50's looking bicycle and though I had not idea what it was going to look like, I told him, "Sure!" The next day he came up with two bikes in his truck along with a gift from his wife whom I have never met though I have eaten many of her delicious cheesecakes through the years. He handed me the tiniest of boxes and in it  was a tiny little hedgehog charm! Then when I looked in the back of his truck I saw the bicycle of my dreams! It was aqua blue, 50's style and I squealed like a school girl. It has the old-fashioned brakes that you back peddle to engage. I jumped on it like a twelve year old and only after I had it going down the road did it dawn on me that I hadn't been on a bicycle since the 1970's. Just to let you know, you can get back on a bicyle and ride off into the sunset. My friend and his wife made me very happy last week. I just need to ask them if I can put a basket on the front. When I mentioned that to Beloved today and then turned around and said, "But what do I need a basket for?" suddenly feeling foolish, he responded, "Maybe a dog?" He SAID IT. I kid you not.]]> 2443 0 0 0 641 0 0 642 0 0 643 0 0 644 0 0 A Tribute to Ginger http://www.sherrifillipo.com/2015/05/19/a-tribute-to-ginger/ Tue, 19 May 2015 12:51:39 +0000 http://www.sherrifillipo.com/?p=2454 German Shorthaired Pointer, 10 weeks old, lying against white background So I have been doing a lot of thinking about bicycles since my friend dropped that cool thing off last week. My bike when I was younger was a little darker but it was a beautiful aquamarine blue with a banana seat (remember those?) that had a sparkle to it. I had turquoise blue streamers off the handlebars  AND a white wicker basket on the front which leads me to Ginger. My dad came home one day with a bird dog puppy. I remember her being just about the cutest thing I had ever  seen. He let my sister and me name her and we chose Ginger - after the voluptuous Ginger on Gilligan's Island. What were we thinking? A few days later Mom took us to the grocery store and while there we picked out a dog collar - a diamond encrusted thing more suited for a poodle than bird dog but hey, we thought it worked well with her namesake. Through the weeks and ensuing months my dad tried to teach her to point - after all that was what she was meant to do...but the only thing she would point for was birthday cake. No, I am not kidding. She would stand stock still in our backyard staring down that piece of cake until someone told her to retrieve it and she did. My dad apparently gave up. With a name like Ginger wearing a diamond collar what could he expect? Except that soon after, I tossed her into my white wicker basket and took off down our street with her flappy bird dog ears fluttering in the wind. She was a good dog. And I think her sparkly dog collar went perfectly well with my aquamarine bicycle. As my life winds down, I often think about pets that have died and I am hoping that I will see Ginger again one day (along with a few other pets of mine). And since I will no longer be sick or middle-aged I am hoping she will be waiting for me in a heavenly wicker basket. We'll see.]]> 2454 0 0 0 646 0 0 647 0 0 650 http://leatherandlacemc.com 0 0 187 Fake Cures for Cancer that Consumers Should Avoid http://www.sherrifillipo.com/2015/05/21/187-fake-cures-for-cancer-that-consumers-should-avoid/ Thu, 21 May 2015 13:05:41 +0000 http://www.sherrifillipo.com/?p=2466 Colorful tablets with capsules Although I can safely say I have never heard of these odd sounding "cures" apparently there are many people who have been duped by these companies. I found this list on  the Food and Drug Administration (FDA) website of almost 200 'drugs' that people should avoid. I guess the biggest thing I take away from this is the number of drugs that are out there and the possibility of desperate people that might try anything.

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    Karyl Sellinger, Herbtime 713 Saco Ct St Augustine, FL 32086 C-Herb C-4 Cream Eye Drops Eye/Ear Wash Immune Max Saw Palmetto Cream Wild Yam Cream
    ]]>     2466 0 0 0 651 0 0 652 651 0 653 http://gravatar.com/thebigscaryblogger 0 0 654 653 0     Curative Versus Adjuvant Therapy http://www.sherrifillipo.com/2015/05/22/curative-versus-adjuvant-therapy/ Fri, 22 May 2015 14:31:53 +0000 http://www.sherrifillipo.com/?p=2472 Colored pills, tablets and capsules

    I am always amazed at what catches a reader's eye and what does not. And if it catches one's eye, it always surprises me what people will take the time to comment about. Yesterday was a good example. If I think the topic I have written about will interest a broad audience I will post my blog to a couple of metastatic breast cancer facebook sites. I also post, on an occasion, to another site where you can join various health communities and discuss the issues at hand. I sent the blog around yesterday as I thought it was interesting to know that there were that many 'drugs' out there that people were spending hope and money on. What I didn't realize was that many would say they were actually taking some of them, a couple of these drugs were fairly popular. I got a lot of comments on my lack of understanding of what was helping out in the cancer community.  What the average person might not understand is that something might be 'helping' someone (whether truly helping or via placebo effect) but helping doesn't mean it is curing anyone from cancer. And I think that's what is escaping many. After all one reader reminded me that chemo isn't curing cancer anymore than the fraudulent drugs that the FDA has listed. Some of these patients have their oncologists' blessing and knowledge while using some of the drugs on yesterday's list, some of them do not. It really was a hot topic that I didn't see coming and a lot of passion around the topic of complementary medicine and immense distrust in the FDA. For the record, I have never taken any of them and as long as one's oncologist knows that you are taking them, I am fine with it. I believe it's only fair to my physician that she knows everything I am doing (whether illegal, legal, herbal, etc) so that as my lab work comes back and my scans come  back, she has a full picture of what I am ingesting so she can interpret results correctly.  ]]>     2472 0 0 0 656 0 0 657 0 1 658 0 0 659 0 0 660 659 0     What You May Not Know About Breast Cancer But Should http://www.sherrifillipo.com/2015/05/25/what-you-may-not-know-about-breast-cancer-but-should/ Mon, 25 May 2015 12:57:52 +0000 http://www.sherrifillipo.com/?p=2482 unnamed[1]]]> 2482 0 0 0 667 http://myleftlump.wordpress.com 0 0 668 667 1 669 http://myleftlump.wordpress.com 668 0 670 669 1 701 0 0 Updates That Have Left Me Smiling http://www.sherrifillipo.com/2015/05/26/updates-that-have-left-me-smiling/ Tue, 26 May 2015 14:32:50 +0000 http://www.sherrifillipo.com/?p=2487 hedgehog

    Beloved's sister and her family were here at the OBX for the long weekend. We always have a great time with this rowdy bunch. By rowdy, I mean they are fun and high-spirited. The weather here has been picture perfect. Clear blue skies, cool nights. We have had a relaxing time. They even humored me while I 'escorted' them out of the neighborhood (on their way back to Philly) last evening on my bicycle! Other good news? My son was pulled off a soccer field last week with a phone call from an agency that he had applied to a couple of months ago. They wanted to interview him - that day?! He went over and performed the required agility testing, written test and interview....they had interviewed a bunch of people...then, they offered him a job on the spot. Wisely, he said he needed to sleep on it. He did and wisely - ha - called his mother and talked to me about it and then accepted the next morning. Halleluiah! He starts on Monday.

    I opened a package on Saturday and out popped a handmade pillow from England with a couple of hedgehogs on it! A cousin of mine had been perusing Estsy and found this artist who designs and sews these lovely pillows - amazing detail.  What a surprise it was!

    desk

    Last but not least, when I was at Mom and Dad's a couple of weeks ago between the funeral and graduation, I noticed an old desk in their garage that caught my eye. I had been looking online and in Corning for something that would fit perfectly in a corner of the beach house where I could blog and write. (I love anything and everything related to an office. It's quite pathetic. I could spend hours at Staples looking at file folders and paper clips.) Come to find out the desk was a teacher's desk that came from my elementary school - the same school Mom and Dad went to! I forget how Dad got it. The school was torn down years ago. But being the great parents that they are, they put the desk on their truck and delivered it to me over the weekend. I used a little Murphy's Oil Soap on it and I am in love with it. What a surprise sitting in their garage! I don't think I could take anymore!]]>     2487 0 0 0 661 0 0 662 0 0 663 0 0 664 663 0 665 0 0 666 665 0     Back in Corning for a Few Weeks http://www.sherrifillipo.com/2015/05/28/back-in-corning-for-a-few-weeks/ Thu, 28 May 2015 15:39:41 +0000 http://www.sherrifillipo.com/?p=2495 corningfingerlakes.com corningfingerlakes.com[/caption] We arrived back home in Corning around 11:00 Tuesday night. I have come home for a couple of weeks to do things I had lined up back in the winter time. One of my silver girls is coming to lecture at Grand Rounds in a week or so. She is an outstanding presenter. I can't wait to give the healthcare system an hour of her knowledge. I will be the one in the back cheering her on. She is an epidemiologist who holds national chair positions in her field and has become a dear friend since my days in Connecticut. After her lecture, she and I will have the weekend together. She, being French, loves champagne as much as I (non-French) do! A bottle or two may be consumed as we sit on the terrace... My mom, aunt and cousin are also coming up for a few days. Can't wait for that either. They are driving but unlike when my dad drove us all to South Carolina to celebrate my uncle's 90th birthday, theses ladies (Think Driving Miss Daisy) are putting the pedal to the metal themselves. Oh my. Mom wants to go back to Ithaca, hippie that she is. There is a super interesting old book store (behind the famous '70s hippie restaurant Moosewood  Restaurant) where she wants to spend more time. It is also time for more blood work and time to "flush and lock" my port as it is called. I don't know why I didn't think about the need to keep this thing in my chest operational. Per vascular protocol, (every two months) ports should be flushed with saline to ensure they are still working and then "locked" with heparin so that they don't clot off. It's no big deal - just a trip to the hospital. I am interested in seeing what my tumor marker indicates. It's obtained through a simple blood test that can show micrometastases meaning it can show cancer activity long before it would appear on a scan. It may sound contradictory to want to know what a number is if you are not going to treat that number. But for me, it will just give me a little update on how quickly or how slowly things are progressing. It will be three months since chemo by the time they draw that lab. And I am curious. It's odd being back in Corning but in a good way. When I left the trees were bare and there was a hard frost. Today, everything is in full leaf and it is in the mid-70's. The wind has picked up and the green hills are so soothing to look out upon. I told Beloved I might have a hard time staying at the beach after all. I may need a fix of each and may need to go back and forth more than I thought. We will see.  ]]> 2495 0 0 0 671 0 0 Young Women and Breast Cancer http://www.sherrifillipo.com/2015/05/29/young-women-and-breast-cancer/ Fri, 29 May 2015 16:07:38 +0000 http://www.sherrifillipo.com/?p=2516 Beautiful breast cancer survivor with bandanna ( 2 months after chemo)

    Over the past few months, I have provided information on the various kinds of breast cancer but haven't gone into other areas such as age, ethnicity or sexual orientation. Today, I wanted to highlight some facts on those women who are at a different place in their lives than I am   - and that is the young woman who has been diagnosed. The information I am using today comes directly from a great website Living Beyond Breast Cancer. This website has a myriad of information, events, help lines and so on that you will find helpful no matter your age. A young woman with a breast cancer diagnosis is defined as someone under the age of 45. Facts about these women include:
    • 5% of woman diagnosed in the US are under the age of 40.
    • Every year, over 11,000 are diagnosed with invasive breast cancer and over 1700 are diagnosed with in situ breast cancer (cancer that has not moved outside the ducts.)
    • Younger women tend to have negative hormone receptors (negative for estrogen, progesterone and the protein Her2) See previous post on Triple Negative Breast Cancer for more specific information.
    Why do young women get breast cancer so early? Some reasons include:
    • younger women might ignore a lump or discharge from the nipple because they don't believe it could be possible to have cancer so young
    • research indicates that younger women are often encouraged to 'wait and watch' a lump more often than older women
    • breast tissue is more dense in younger women and being able to palpate (feel) a lump may be more difficult
    • dense tissue makes reading a mammogram more difficult
    For those of you who would like more information, Living Beyond Breast Cancer is hosting an event Breast Cancer 360: Mapping the Future for Young Women With Breast Cancer on Saturday, June 13, 2015 from 9:00am - 12 noon eastern standard time.  The event can be attended in person or online. Click on the link for full information.  ]]>     2516 0 0 0 672 0 0 673 0 0 674 0 0     African American Women and Breast Cancer http://www.sherrifillipo.com/2015/06/01/african-american-women-and-breast-cancer/ Mon, 01 Jun 2015 14:55:34 +0000 http://www.sherrifillipo.com/?p=2524 Beauty shot of an African girl. Half face crop

    Beautiful smiling african american woman

    Friday I wrote about young women and breast cancer. Today I want to share some information on this disease as it pertains to African American women. There is  a great website to help answer more specific questions and it is called Sisters Network, Inc. Founded in 1994, the website says it is a leading voice and the only national African American Breast Cancer survivorship organization in the United States. According to the American Cancer Society African American 2013-1014 Cancer Facts (as stated in this website) it notes some very serious information about this disease as it relates to this population:

    Breast cancer is the most commonly diagnosed cancer among African American women. An estimated 27,060 new cases of breast cancer [was] expected to occur among African American women in 2013. Among younger women (under age 45), the mortality rate of breast cancer is higher in African Americans than in whites. The median age of diagnosis is 57 years for African American women, compared to 62 years for white women. Breast cancers diagnosed in African American women are more likely to have factors associated with poor prognosis, such as higher grade, advanced stage, and negative hormone (estrogen [ER] and progesterone [PR]) receptor status, than those diagnosed in white women. Furthermore, premenopausal African American women in particular appear to have a higher risk for triple-negative (ER negative, PR negative, and  human epidermal growth factor receptor [HER] 2 negative) and basal-like breast cancers, which are distinct but overlapping aggressive subtypes of breast cancer that are associated with shorter survival. The 5-year relative survival rate for breast cancer diagnosed in 2002 - 2008 among African American women was 78%, compared to 90% among whites. This difference can be attributed to both later stage at detection and poorer stage-specific survival among African American women. Only about half (51%) of breast cancers diagnosed among African American women are diagnosed at a local stage, compared to 61% among white women. Within each stage, 5-year survival is also lower among African American women than whites overall (60% versus 69%).
    These statistics are incredibly sobering. I hope you will share this website with friends, family and co-workers who may benefit from this information and the support this website can give.]]>     2524 0 0 0     Ashkenazi Jewish Women and Breast Cancer http://www.sherrifillipo.com/2015/06/02/ashkenazi-jewish-women-and-breast-cancer/ Tue, 02 Jun 2015 13:55:53 +0000 http://www.sherrifillipo.com/?p=2542 Rochelle Shoretz Rochelle Shoretz[/caption] A young Jewish woman seen above, Rochelle Shoretz, died on Sunday from metastatic breast cancer. Ms. Shoretz's heritage is of Ashkenazi descent, which made her more susceptible to both breast and ovarian cancer. Studies that were conducted in 1994 and 1995 showed a gene mutation that posed an increased risk for breast cancer. In 1995 and in 1996, DNA studies revealed that Ashkenzai Jews are ten times more likely to have these gene mutations, known now as BRCA1 and BRCA2, than the general population. Ms. Shoretz was originally diagnosed in 2001 and at the time wished that she could talk to women who were like her and founded the group Sharsharet which in Hebrew means "chain." This website offers a wealth of information and support not only for young Jewish women who are living with breast cancer but women at any age living with this disease. The site offers educational material, events, and support groups. In 2009, Ms. Shoretz's  cancer returned and on Sunday she died at the age of 42. Born: 1972  Breast Cancer Diagnosis: 2001   Terminal Diagnosis: 2009   Died: 2015]]> 2542 0 0 0 Lesbian and Bisexual Women and Breast Cancer http://www.sherrifillipo.com/2015/06/04/lesbian-and-bisexual-women-and-breast-cancer/ Thu, 04 Jun 2015 14:23:46 +0000 http://www.sherrifillipo.com/?p=2548 p_898

    I cannot tell you how much I learn when writing this blog. Today is a good example of that.  From the American Cancer Society, note these statistics about lesbian and bisexual women as it relates to breast cancer:
    Studies have found that lesbians and bisexual women have higher rates of breast cancer than heterosexual women. They also get less routine health care than other women, including colon, breast, and cervical cancer screening tests. Some of the reasons for this include:
    • Low rates of health insurance: Many health insurance policies don’t cover unmarried partners. This makes it harder for many lesbians and bisexual women to get quality health care. Many states now offer family health insurance plans that may help you get coverage in other ways.
    • Fear of discrimination: Many women don’t tell their doctors about their sexual orientation, because they don’t want discrimination to affect the quality of health care they receive. This can make it harder to have a comfortable relationship with a provider. A lesbian, gay, bisexual, and transgender/transsexual (LGBT) community center or group may be able to refer you to LGBT-friendly health care providers (see below).
    • Negative experiences with health care providers: Fear of having a negative experience with a health care provider can lead some women to delay or avoid medical care, especially routine care such as early detection tests. Missing routine cancer screening tests can lead to cancer being diagnosed at a later stage, when it’s harder to treat. Today, there are many LGBT-friendly providers. Don’t give up – find the respectful care you deserve!
    There is a national website, the National LGBT Cancer Network  which questions the research that has been done to date to draw a lot of conclusions citing that the numbers of lesbians and bisexual women studied have been too small. This website uses the phrase "cluster of risk factor theory" stating the four most-cited cancer risk factors in the research on lesbians and breast cancer risk are:
    •    Cigarette smoking - data suggest that lesbians smoke cigarettes at a substantially higher rate than heterosexual women.
    •    Alcohol use - some research reports higher rates of heavy drinking among lesbians than heterosexual women
    •    Obesity - some studies report that lesbians are more likely to be overweight or have a Body Mass Index (BMI) over 25.
    •    Pregnancy - lesbians are less likely to have biological children before age 30, which would offer some protection against cancer.
    Liz Margolies, a licensed social worker, wrote this article where it first appeared on Dr. Susan Love's website. Dr. Love as you may recall has written The Breast Book, a comprehensive and highly readable  book on every aspect of breast cancer. She is completing her 6th edition and should be on the market in the near future.]]>     2548 0 0 0 680 0 0     Feeling Ephemeral http://www.sherrifillipo.com/2015/06/03/feeling-ephemeral/ Wed, 03 Jun 2015 13:53:49 +0000 http://www.sherrifillipo.com/?p=2560 old letters, handwritings, vintage postcards, ephemera. grungy nostalgic sentimental paper background

     Yesterday

    I woke up at 4:00 this morning and thought of the word "ephemera." I know, it sounds so hoity-toity but it's not. It is a cool word I learned a long time ago -  that I have loved since I read the definition though it has changed through the ages. It started out meaning something that is here for a while and then gone, something  transitory. It has evolved to become more about things made of paper which are not supposed to last forever - like a theater ticket. Why would I wake up from a sound sleep and think of that word? Well, I have been ruminating about that all day.  Counting today, I have had three what I call "low" days. I can't quite explain why except for the glaringly obvious. I have been listless. I haven't gotten out of my pajamas and haven't felt like going out or talking to anyone. I am still back in Corning and have to admit, that the thought of returning to the OBX soon feels so daunting to me as I write. How opposite to how I was feeling a month ago, right? I get the contradiction. But I don't fully understand why. A month or so ago, it was still quite cold here. I mean three inches of snow fell Easter Sunday and I think at the time, I couldn't wait for warmth. But in actuality, summer has never been my time of the year. Heat and I do not mix. Never have. Add a couple of flights of stairs (inside and outside the beach house, never mind the mountain of stairs at the beach to get down to the water) and I feel like I cannot handle it. That I am much more comfortable and safe here in my little apartment. Ephemeral? That's how I am feeling today. Like tissue paper or cotton candy.

    This morning

    I woke up this morning with a cat lying next to me thinking that I might have a better day today. The sun is trying to come out through the fog. That is sort of how I feel.  I have opened the terrace door and the other cat is lying half-way in half-way out. Maybe that is a picture of me as well. Lest you think I am always "up" and happy. This should balance out those thoughts.]]>     2560 0 0 0 675 0 0 676 0 0 677 676 1 678 0 0 683 0 0 681 0 0     Friday Afternoon in Corning http://www.sherrifillipo.com/2015/06/08/friday-afternoon-in-corning/ Mon, 08 Jun 2015 15:07:51 +0000 http://www.sherrifillipo.com/?p=2575 It's Monday morning and everyone is back to work but me...though I did have a great weekend. As I wrote last week, one of my silver girls came and lectured at Medical Grand Rounds at the health system here. Though I have known her for years, I am never ceased to be amazed at the depth of her knowledge. We celebrated her visit and the completion of her lecture by driving to Corning and popping a bottle of champagne at 2:00 Friday afternoon! (This is the other side of not working for me. I can sip bubbly in the middle of a work day if I choose!) Check out our pitiful baby boomer selfie taken after one SIP of champagne, not one glass:

     Baby Boomers & Selfies

    I don't know why we didn't stand in front of the flowers or the hills but hey, like I said, we are baby boomers. We talked all afternoon. And then we decided to text her mother as she loves to keep up with our antics. She is lovely and French and will write me the best emails, providing me her opinions on my blogs, her reflections on what I have written. I love to get an email from her mom. So, we sent her this selfie and a couple of other pictures and later on we heard a dainty 'ping' and got the nicest response back - in French of course! In part it said something like, "The balcony is magnificent, a perfect place for farniente.  It is a French word for "sweet doing nothings/delicious idleness." Don't you just love the picture that it conjures up? I think that is exactly what we did all afternoon.  No where to go. No place to be - just the two of us (missing our other silver girl) sipping and talking in delicious idleness...

    ]]>     2575 0 0 0 682 0 0 684 682 0     Metastatic Breast Cancer: As Lived by Holley Kitchen http://www.sherrifillipo.com/2015/06/09/metastatic-breast-cancer-as-lived-by-holley-kitchen/ Tue, 09 Jun 2015 13:42:59 +0000 http://www.sherrifillipo.com/?p=2590 2590 0 0 0 685 0 0 686 0 0 687 0 0 688 0 0 689 0 0 Go Fly A Kite http://www.sherrifillipo.com/2015/06/11/go-fly-a-kite/ Thu, 11 Jun 2015 14:36:49 +0000 http://www.sherrifillipo.com/?p=2592 colorful kite flying in blue sky My mom, aunt, and cousin are up from North Carolina and we are having a grand time shopping and eating our way up and down Market Street. Yesterday we sat at the town square and watched local kindergartners race through the town looking for things that started with each letter of the alphabet. The town was a buzz with five year olds and their parents/grandparents trying to keep up with them. The children carried clipboards as large as they were and squealed every time they found a store sign that started with the letter they were working on (hint for next year's students: the word on the street is that in the public restroom there is a hand dryer with the company name "xcelerator" for that pesky "x" that everyone was looking for!) After lunch on the square we went over the walking bridge and spent the afternoon in the Corning Museum of Glass gift shop - yes it is that big. You can find everything from five dollar trinkets to $40,000 pieces of glass. Word to the wise: when you shop, keep you elbows in! Afterward we walked back over the bridge and noticed an elderly couple flying a kite. We were so taken aback and so misty-eyed at the sweetness of it all. We then began to lament to each other all the ways that that lovely scenario might not happen - one of us said she wouldn't be with anyone at that age, I squeaked out I would never be a grandmother and so on until we came upon them  - the lovely couple turned out to be a young man flying the kite and an elderly gentleman  pushing his walker. They were strangers.  Neither knew the other and we laughed out loud at what our minds had told us we were missing - which it turned out was nothing after all. We had more family together watching that twosome than  anything we were hoping for in that pretend future that we had conjured up! God is funny - reminding us what we have now is often just the right amount.]]> 2592 0 0 0 690 0 0 691 0 0 692 0 0 Please Keep Sharing Information About Metastatic Breast Cancer! http://www.sherrifillipo.com/2015/06/12/please-keep-sharing-information-about-metastatic-breast-cancer/ Fri, 12 Jun 2015 16:33:37 +0000 http://www.sherrifillipo.com/?p=2599 Holley Kitchen video about metastatic breast cancer. My sister-in-law is Belgian and was reading an online newspaper in Flemmish when she happened upon the video. She sent me a screen shot pictured below and wanted me to express to everyone reading that information is getting out there and this for me was great proof! Note the right-hand column under "video."

    holley kitchen

    ]]>     2599 0 0 0 693 http://gravatar.com/lmd1008 0 0 694 0 0 695 0 0     Momma Monday Is Back! http://www.sherrifillipo.com/2015/06/15/momma-monday-is-back/ Mon, 15 Jun 2015 14:00:58 +0000 http://www.sherrifillipo.com/?p=2606 distilling logo Finger Lakes Distilling, 4676 NYS Route 414, Burdett, NY[/caption] My small world has calmed back down since my mom/aunt/cousin drove away on Friday morning. I think they all left with a greater understanding of the Finger Lakes region than ever before. It is funny if you live in a certain part of the country, other areas seem a bit sketchy. Several times during their visit, we pulled out google maps (once at the museum where there is a large billboard size map and had a little geography lesson.) Beloved says he cannot believe that until I moved here I had never heard of the Finger Lakes. They couldn't figure out where Niagra Falls was compared to where we were and they wanted to relocate New York City to Albany but after we looked at the large map, it all fell into place. I did not ask them to name the lakes in order as even after living here three years, I cannot do it. On Thursday, we drove up to Seneca Lake and had lunch. Of course I took them to the Finger Lakes Distillery. Though the area is known for its Riesling wines, there is a distillery on the east side of the lake that is making award winning gins, whiskeys, vodkas and my mother's favorite - grappa. Not really.  These family members are not drinkers (minus Mom!) but since the distillery has such a magnificent view of the lake, it is worth a quick jaunt to stand in their parking lot and take it all in. So we did. But I had an ulterior motive. I wanted Momma to take a sip of grappa. For those of you who don't know about this mysterious drink, let me put it this way - it tastes like lighter fluid! But there are those out there who love it and you know who you are. Grappa is what is left after the wine is made. It consists of the skins, pulp, seeds and stems of the grapes (yum?). Since I haven't had a Momma Monday in quite a while, this is as close as I was going to get. We all walked in and I noticed that the employees kept vigil on us, waiting for us to walk over and do a tasting. After a while, I went over to a gentleman and told him these ladies were not drinkers and certainly not at 2:00 in the afternoon. But I did inquire whether he would like to see my mother taste grappa.  He grinned and told me to bring her over. "Mom. You have to come over her and experience grappa." You know by now she is a good sport but she was hesitant. She told the distiller that she had heard from me that it tasted like kerosene (?) but we both urged her to taste it. So, she did. Then she squealed, "Oh my word. My mascara is melting!" And she swung her head back and forth trying to get it out of her memory! Then she yelled, "My tongue has gone numb!" She was not impressed but I told her what a story she could tell when she called Dad later that night. And she did. I think he was impressed.  ]]> 2606 0 0 0 696 0 0 697 0 0 698 0 0 699 697 1 As You Go About Your Day, Please Remember This: http://www.sherrifillipo.com/2015/06/13/as-you-go-about-your-day-please-remember-this/ Sat, 13 Jun 2015 15:57:11 +0000 http://www.sherrifillipo.com/?p=2616 109]]> 2616 0 0 0 The Unseen World http://www.sherrifillipo.com/2015/06/16/the-unseen-world/ Tue, 16 Jun 2015 12:56:16 +0000 http://www.sherrifillipo.com/?p=2620 virus I was out and about doing errands in Corning today and ran into one of my friends. We began to talk about my cancer and a relative of hers that was having some issues with pain. She is a believer of "if you live right, nothing bad should happen to you." I told her that we live in a  fallen world and that until the Lord comes back, there would be lots of bad things happening - even to "good" people. When I tried to explain fallen world, she reminded me that she did not believe in the Bible. And nothing seemed fair. I told her life wasn't fair. Then we moved on to other less difficult topics. Later this afternoon, I read my devotional. (You know the one, Sarah Young, Jesus Calling):
    You need a buffer zone of silence around you in order to focus on things that are not seen...the curse of this age is overstimulation of the senses, which blocks out awareness of the unseen world.
    I love to sit and think about an unseen world. That what we see is NOT all there is. Just like the microscopic world around us - we can't see it but no one disputes its existence - there is another world where we as believers will go and then live there FOREVER. And right now, you can't see that one either.  This is want I wanted to tell my friend. That all those things in her mind that are not fair - that bad things happen to "good" people and so on. All of that will be sorted out and will be made "fair" just not by me. By God. I won't have that burden. I will be too busy catching up with my grandmother, my uncle, my great aunt and so on. But I need to get back to her (this was not our first conversation) to tell her that a decision has to be made on this side of the unseen world. It will be too late when she arrives on the other.

    So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18

    ]]>     2620 0 0 0 702 0 0 703 http://pilgrim125.wordpress.com 0 0 704 0 0 705 0 0 706 0 0 707 0 0     An Update From My Oncologist http://www.sherrifillipo.com/2015/06/17/an-update-from-my-oncologist/ Wed, 17 Jun 2015 13:27:45 +0000 http://www.sherrifillipo.com/?p=2629 Wooden stairs at beach entrance near Maasvlakte Rotterdam. I guess when I wrote here of the last visit with my oncologist, I didn't realize that she and I would still see each other every few months. As a nurse I wasn't thinking  that my port would need to be flushed occasionally even if it was not being accessed. I am fine with that as I love this woman, as you know. So, today we met after not having seen each other since March. It did not take long before our eyes were shimmering with tears.  She asked me how the beach was going and I was so sad to tell her it was not going as I had planned nor had hoped. And so I am telling you, my reader as well. In May, I found the stairs inside my beach house (three levels) and the steps at the beach (multiple flights up, then a landing and then multiple flights down to the water) so daunting and so difficult that as I told her, I began to cry. Beloved interjected that my apartment here in Corning is all on one level and though on the third level of a building, I have an elevator that takes me to the top. So while I may scurry around my New York home and feel really confident about myself and my abilities, I arrive in North Carolina and suddenly I am winded and hot and can't do anything....so my time at the OBX is being shortened. I simply have to accept that I cannot do it.

    calm-blue-ocean-14485.jpg

    So then I told my oncologist how frustrated I am that my labs (except the tumor marker) indicate that all is normal and that infuriates me as it is NOT normal on the inside. She smiled and said I was the classic metastatic cancer patient, saying that blood work doesn't reflect what the woman is actually feeling. She said that is why she does not order blood work if the person is not having chemo. It just isn't that helpful. When I asked her about the tumor marker that had doubled since I saw her in March - was that an indicator that it would double again in September, she told me no. She said she bases her assessment now on what the patient describes to her. My eyes widened, "You take subjective information over objective data?" Yes, she said she did. It is much more accurate than any lab work at this time. Our time had come to an end. As much as we talk, I wonder if she double books me though I try to be cognizant of her time, I do try to get in as much as I possibly can. I asked her the hated question of all oncologists. The absolute worst question to ask. (I didn't care.) "Time wise. Based on my subjective data (!) and my tumor marker along with my history, how long do you think I have?" She looked down and then looked up and said, "I think you are probably correct in saying that you are entering your last year."  I knew it. I love her. She has nothing else to offer but increased palliative care and then hospice and then nothing. I wish every breast cancer patient could have her for their physician. Her last words were, "You are in my thoughts and in my prayers daily."]]>     2629 0 0 0 720 http://www.tellingknots.org 0 0 721 717 1 722 719 1 723 720 1 710 0 0 711 0 0 712 0 0 713 710 1 714 711 1 715 712 1 716 0 0 717 0 0 724 0 0 719 http://p1nk66.wordpress.com 0 0 725 http://myleftlump.wordpress.com 0 0     We Can All Be Used By God http://www.sherrifillipo.com/2015/06/19/we-can-all-be-used-by-god/ Fri, 19 Jun 2015 08:11:22 +0000 http://www.sherrifillipo.com/?p=2641 richard's cross For many of you the list below will be one you have seen many times over. But when I begin to feel guilty of all my many sins (as many as there are stars). I think about this list.  I do get a kick of how God has shown through the ages that we can ALL be of us for His purposes. If you haven't seen this list before, think of the one worst sin that you could commit and that God would say to you, "Yep. You are right. You are horrible. Can't use you..." You won't be able to list it. Don't believe me? Read this list:

     Abraham was too old

    David was an adulterer and a murderer

    Elijah was suicidal

    [pullquote]Now tell me. What have you done that you can't ask for forgiveness, move on with life and wait for God to use you?[/pullquote]

    Gideon was afraid

    Isaac was a daydreamer

    Isaiah preached naked

    Jacob was a liar

    Jeremiah and Timothy were too young

    Job went bankrupt

    John the Baptist ate bugs

    Jonah ran from God

    Joseph was abused

    Lazarus was dead!

    Leah was ugly

    Martha worried about everything

    Moses stuttered

    Naomi was a widow

    Noah was a drunk

    Paul was too religious and before that, was a murderer of Christians

    Peter denied Christ

    Rahab was a prostitute

    Samson had long hair and was a womanizer

    The disciples fell asleep while praying

    The Samaritan woman was divorced, multiple times over

    Timothy had an ulcer

    Zacchaeus was too small

       ]]>     2641 0 0 0 726 0 0     Tattooing Ink Can Cause PET Scan Misdiagnoses: Did You Know? http://www.sherrifillipo.com/2015/06/18/tattooing-ink-can-cause-pet-scan-misdiagnoses-did-you-know/ Thu, 18 Jun 2015 14:21:56 +0000 http://www.sherrifillipo.com/?p=2655

    This article is from CBS news. I have never heard of this phenomenon and wanted to share it with you.

    Girl tattoo artist works on the client ORANGE, Calif. -- A woman with cancer had a major scare after ink from her tattoos caused an imaging test to light up, leading her doctor to believe the disease had spread. Dr. Ramez Eskander, an Orange County surgeon, told CBS Los Angeles that ink from his patient's tattoos, which covered her legs and thighs, had lit up her lymph nodes on a body-image test called a PET scan. The images led doctors to believe her cervical cancer had spread to her lymph nodes. But once in the operating room, doctors learned it was tattoo ink causing the bright spots on her scan -- not cancer cells. "When you tattoo, some of that ink will be absorbed in the cells in the lymphatic system and migrate to levels of lymph nodes," he said. Eskander published his findings this week in the Journal of Obstetrics & Gynecology. He says the patient's case should serve as a warning to people with body art and their doctors. "What we wanted to do is educate physicians, patients, families," he said. "When there is a PET scan that shows a bright lymph node, if a patient has significant tattoos or body art, then you have to be cognizant that these might be false positives." In this woman's case, she still received a hysterectomy because she did have cervical cancer. However, because it had not spread as originally thought, she did not need to undergo radiation, which can have lifelong side effects. "She was thrilled to share her story with everyone, but she never indicated she regretted the tattoos," Eskander said. Eskander hopes his study creates a conversation about early detection and prevention, and says the human papillomavirus (HPV) vaccine and exams are the key to that for cervical cancer. Researchers were not able to determine exactly how much tattoo ink is needed to cause a misdiagnosis from a scan.]]>     2655 0 0 0     Treasures Ahead http://www.sherrifillipo.com/2015/06/22/treasures-ahead/ Mon, 22 Jun 2015 17:18:37 +0000 http://www.sherrifillipo.com/?p=2668

    I am reading a book on everyday celebrations, Cold Tangerines by Shauna Niequist. She writes and thinks in many ways like I do. Sometimes I read a sentence and wish I had thought of it. I sat out on the beach yesterday (yes, I made my way down there with Beloved. I think it was 202 degrees but I am not sure.) As I sat and watched fathers and grandfathers play with their families, I read a section about her husband's grandfather. He had recently died while she was pregnant and she lamented how sad she was that her unborn son wouldn't get to meet him, his first great-grandchild. She told of a story about him that I thought was magical.  He and his wife lived on a river and when the grandchildren would come, they would take walks around the riverbank where Grandad would encourage the kids to look really closely in the water for "shiny things." And inevitably, the grand kids would find pennies, nickels, quarters. For years, the children thought the river was magical. And then every so often, there would be a new ball bobbing in the water or some other toy.  At the granddad's funeral, the now adult grandchildren sat and talked of all the many ways their granddad had enriched their lives. And then when they got to the story about how Granddad had salted their paths with money and toys, a couple of them did not know until then that Granddad was always walking ahead of them sprinkling treasures in their upcoming paths. Sounds like another Father I know....]]>     2668 0 0 0 727 https://plus.google.com/117921611596419106652 0 0 728 0 0 729 727 0 730 728 0 1032 730 0     A Perfect Plan http://www.sherrifillipo.com/2015/06/23/a-perfect-plan/ Tue, 23 Jun 2015 15:21:46 +0000 http://www.sherrifillipo.com/?p=2676 Ball of yarn in the form of a heart on a white background Remember a few months back I wrote about my three relatives who had been diagnosed with cancer in what felt like rapid succession. As frequent readers know, one of them, my uncle, died quickly from the ravages of cancer within five weeks of diagnosis. I learned on Father's Day,  a second relative awaiting a stem cell transplant has had to postpone the procedure due to other non-cancer related complications. And now my third relative is on his way to NC for consultation among other things. I haven't seen this relative in five years. The last time was at his home where his family welcomed us for dinner and we had a mini family reunion. I had been diagnosed a couple of months prior and at the time was patiently/anxiously waiting on my double mastectomy. While on the beach Sunday, I was praying a little bit and knew they were coming to NC and would be closer than I had been to this part of our family since that dinner a lifetime ago. I also had plans this week to drive to my hometown and help my son set up his first apartment and talk life with him as he asked me to do (forever my little  - now big - philosopher.) Of course he is my priority. I haven't seen him since that overhelmeingly tearful goodbye at the NY airport in January. How, I asked the Lord, was I going to be able to see my relative which, as far away as we live, will undoubltly be our last earthly visit together due either to his health, my health or a combination. Let's just say if I were doing all I needed/wanted to do, I would be zig zagging back and forth across the state and you know how little energy this old caboose has especially when the temperature for the week here in NC is supposed to be record - somewhere between 300 and 400 degrees, I think. And before I continue telling this tale to  you, I need to say that I never expected my blog to become a devotional - heck I didn't know when I started what it was supposed to be. I wasn't sure what a blog WAS for pity sake. But unlike the author I wrote about yesterday who says that writing for her, and I am paraphrasing, is difficult and time consuming as she can find all kinds of things to do instead of the task at hand. She says if you are the type of writer who sits down and out it flows from your fingertips, we (meaning her and the writer/reader) will never be having coffee together at 9:00am somewhere cool. Meaning, the two people would be so polar opposite as not to have anything in common. She was being a bit tongue-in-cheek but she was in a way describing me. Many times I do have a topic due to a situation but many times I sit down and I am not sure what is going to come out of my finger tips. I do find it interesting that the blog is somewhat balanced - education, devotion, humor but I don't know when and how these three categories will pop up. So that is my disclaimer for today's blog. Come to find out my son was just put on 12 hour shifts at his new (!) job and he, as a paramedic (just passed the certification!) will be working back-to-back shifts and then will be off several days. Not until I began driving west from the OBX did either of us know that. My out of town relatives will be here this afternoon and instead of being on the highway racing from son to sick relative, I am staying put at Momma Jane's until she and I drive over to dinner about a half hour away this evening while my son sleeps since he is on night shift. And then later this week, I will go and help him start his new adult life, both of us rested. Ah, the plans of man. Do you know the verse? In their hearts humans plan their course, but the Lord establishes their steps. Proverbs 16:9 On the beach Sunday, I had decided I needed to be at two places at once. I fretted on the beach for a while about how I was going to do that. How my energy was going to hold up. How I was going to make it through 5:00pm traffic in Raleigh on Tuesday and on and on. And like a knotted ball of yarn, God just unknotted it and wound it into a nice ball ready for use. I cannot wait to see my cousins and my son.]]> 2676 0 0 0 731 0 0 732 0 0 Now Where Was I? http://www.sherrifillipo.com/2015/06/29/now-where-was-i/ Mon, 29 Jun 2015 15:21:52 +0000 http://www.sherrifillipo.com/?p=2693 Jim and Mamma Jane Jim and Momma Jane at EMT Pinning Ceremony[/caption] [caption id="attachment_2700" align="alignright" width="400"]Momma Jane and Jim at Pinning Ceremony Momma Jane and Jim at EMT Pinning Ceremony[/caption]                   Holy cow has time  flown by. Last week I did get to see my cousin (and his family) who was in for a medical consultation. He and I laughed while at dinner  his brother and Momma Jane couldn't remember someone's name. And they did this little, "You know...he was tall....you went to school with him...didn't you go to school with him...what was his name?" My cousin looked at me and I at him and I said, "Welcome to our world, right?!" It is so true that the older you get, the more family means to you. I didn't want that night to end. They live so far away and we had the best time. We sat at a lovely round table where we could see each other so easily.  Seven of us talking about past reunions, how funny their dad was, how sad and difficult it is that their dear mother is suffering from dementia and so on. But we laughed at old memories and before you know it, dinner was over. Dessert was shared and we kissed and wished my cousin well with his doctor visit the next day...dinner and time with them over in the blink of an eye... The next morning I drove into Greensboro to help my son apply for his first apartment. What a day. But as I sat there and watched him complete the application and then go to the bank and obtain his first credit card (no worries - this boy is frugal) I was so thankful in my heart that after such a climb (think Sisyphus and the rock that he keeps pushing up hill just to have it roll back down to start over again...unlike Sisyphus, Jim reached the top and the rock stayed put!) I sat there all day Wednesday as we worked through this process and was so proud of him, my heart hurt. IMG_1088 He chose a one bedroom apartment which unbeknownst to us has a small wood burning fireplace. If you know me, you know of all the things in this world, this is just about the most important home feature. And when we looked over and saw it, he just grinned and said, "Oh, cool!" More tomorrow. Suffice it to say, I started nesting on his behalf while he worked a 24 hour shift. He told me he trusted my taste and design and to just go for it. It turned out so well for a first bachelor pad, if I do say so myself.]]> 2693 0 0 0 734 0 0 735 0 0 750 0 0 Your Teeth and Chemo http://www.sherrifillipo.com/2015/06/30/your-teeth-and-chemo/ Tue, 30 Jun 2015 13:04:32 +0000 http://www.sherrifillipo.com/?p=2708 Close up shoot of zebra mouth displaying bad dental hygiene Well, when it comes to breast cancer, I thought I knew it all but there is one thing that I learned recently that I wanted to share. And that is with chemo comes the potential for tooth loss. I know, between the cancer and the chemo, is anything left alone? Apparently not. I have never had great strong teeth. Between all the candy I have consumed over the years and the lack of fluoridation in our well water growing up, my teeth have always been silvered from one end of my mouth to the other.  Over the past two years,  I have lost two perfectly good teeth. When I mentioned it to my oncologist, she said it was due, alas, to the chemo. I knew it could give you a dry mouth and that some chemos can cause mouth ulcers to form but I didn't appreciate that a tooth could just start to wiggle. And the next thing you know, your dentist is getting leverage by putting his foot on your stomach so he can grip the tooth puller better and and yanking that perfectly good tooth out. Then asking you if you want it for a souvenir. I also didn't know that I was supposed to contact my oncologist before any dental appointment. Maybe you did. Maybe she told me and I was not listening...but I am supposed to have blood work completed prior to any work  being done to ensure the dentist with the big feet and big hands that I go to doesn't get a surprise when I don't stop bleeding for him. If it's not one thing, it's another.  ]]> 2708 0 0 0 736 0 0 737 0 0 738 0 0 746 0 0 747 746 0 749 0 0 Time http://www.sherrifillipo.com/2015/07/01/time/ Wed, 01 Jul 2015 13:47:01 +0000 http://www.sherrifillipo.com/?p=2718

    I had the best time shopping for my son last week, choosing things that I wouldn't select for myself but thought would be just perfect for a young man's first apartment. I know maybe he should choose his own things but I admit I also had an ulterior motive though it didn't dawn on me until a couple of days later. I realized after I had fixed up his place and then found myself at Whole Foods looking for some strange toothpaste that he had asked for, did I realize I was trying to fill a lifetime of giving into a few days. You see, I won't be here when he turns 30 or 40. I won't witness his marriage nor the birth of any grandchildren. For those of you who do not know me, he is my only child (though I have three awesome stepchildren who have given me great joy but no marriages or babies but I digress!!) And off and on last week, I would find myself weeping in shopping center parking lots or on the way to his apartment, the concept of time being so acute to me. Did you know he does not read this blog? Never has? My prayer will be that one day he will. I have tried to gently ask him why he doesn't. For the past two years he claimed school gave him more reading than he could keep up with. I let that excuse go....now with school behind him he doesn't have that excuse but I have decided to let it lie fallow. This blog with all its rambling and drivel will be here for his perusal long after I am gone. I have also been keeping a written journal for him of a more intimate nature. He likes for me to tell him stories of when he was a baby or a toddler. So I have conjured up every story I could think of and have been writing them down over the past couple of years. I have shown him the cover of the notebook so he will know what to look for. For those of you who are in my shoes, maybe that is something you might want to do too?]]>     2718 0 0 0 739 0 0 740 0 0 741 0 0 742 739 0 743 740 0 744 741 0 745 0 0 748 0 0 918 0 0     The End: How to Talk about Dying by Ellen Goodman, The New York Times http://www.sherrifillipo.com/2015/07/02/the-end-how-to-talk-about-dying-by-ellen-goodman-the-new-york-times/ Thu, 02 Jul 2015 14:16:29 +0000 http://www.sherrifillipo.com/?p=2736   I know I am known as the Dr. Kevorkian of bloggers but I am dedicated to getting as many people as possible to have death and dying conversations. Ellen Goodman writes a powerful article about the death of both her father and then later her mother. I hope it sparks more conversations. ************************************************************** I was 25 when I flew home for my father’s last birthday. His cancer had returned and he would die three months later at the age of 57. What I remember most about that weekend was the large rectangular gift box he opened. My mother had bought him a new suitcase. I don’t know if that suitcase qualifies my family for the Denial Hall of Fame. There are so many contenders for that honor. But I’ve carried the psychic baggage over the years. I have never forgotten that image and how we lost a chance to say goodbye. I still wonder if my father was lonely in the silence that surrounded our inability to talk about what we all knew. Decades later my mother began a long slow decline. By then, I was a newspaper columnist, a job that I often described as “telling people what you think.” I was professionally outspoken. But little had changed since my father’s death. Yes, my mother and I talked about everything — but we didn’t talk about how she wanted to live toward the end. The closest we ever came to discussing her wishes was when she would see someone in dire straits and say, “If I’m ever like that, pull the plug.” But most of the time there is no plug to pull. Gradually and painfully, my mother lost what the doctors call “executive function,” as if she were a C.E.O. fumbling with Excel spreadsheets, not a 92-year-old who couldn’t turn on the television or make a phone call. Eventually, she couldn’t decide what she wanted for lunch, let alone for medical care. In some recess of my mind, I still assumed that death came in the way we used to think of as “natural.” I thought that doctors were the ones who would tell us what needed to be done. I was strangely unprepared, blindsided by the cascading number of decisions that fell to me in her last years. I had to say no to one procedure and yes to another, no to the bone marrow test, yes and yes again to antibiotics. How often I wished I could hear her voice in my ear telling me what she wanted. And what she didn’t want. When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened. Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing. The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end. So, a small group of us — each with his or her own story — started the Conversation Project, a nonprofit, out of the belief that surely we could make this easier. Our partners at the Institute for Healthcare Improvement gathered experts frustrated at the pace of change who believed that the health care system wouldn’t change until the culture changed. So we are trying to change the culture. There is now, finally, a real momentum for improving end-of-life care. The signs range from the Institute of Medicine’s report, “Dying in America,” to the success of Atul Gawande’s book “Being Mortal.” There is also a growing public awareness of the need to break through the reluctance that has kept us tongue-tied for so long. A survey we did last year showed that 90 percent of Americans now think it’s important to have the conversation. But the same survey showed something else: Only 30 percent of us have actually had these conversations. So the gap remains huge. We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U. In our survey, the primary reason people gave for not talking to their loved ones was “It’s too soon.” But it’s always too soon … until it’s too late. Half of all elderly people in hospitals cannot make decisions for themselves at the end of life. Far too many health care providers are uncomfortable and untrained in these conversations. From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a Conversation Starter Kit, which deliberately avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living. Our starter kit asks what matters to you, not what’s the matter with you. It asks what’s most important to you in the last phase of your life? Who do you want to make decisions for you? Where do you want to be? Do you worry that you won’t get enough care? Do you worry that you’ll get overly aggressive care? About two-thirds of the nearly 300,000 people who have come to our website download the starter kit, which is free. We’ve been told repeatedly that conversations that had loomed as frightening and overwhelming repeatedly turned into the most intimate and rewarding moments. Is it important to have the health care system ready to respect and record our wishes, to have health care providers become more comfortable beginning these talks? Of course. But the hard truth is that we have to begin ourselves — by thinking about our own values, by sharing them, by bringing our own beliefs into the center of the room when decisions will be made. In my own adulthood, the culture of birth changed. It wasn’t doctors who first tossed out the stirrups and ushered in fathers and video cameras and “birthing rooms.” It was parents who said, birth is not just a medical experience, it’s a human experience. Now we are finally saying that dying, too, is not just a medical experience, it is also a deeply human experience. Last winter we held a national dinner party to break bread and taboos, to eat comfort food and talk about dying. I shared the table with Nancy Frates, who is known for starting the A.L.S. ice bucket challenge to honor her son Pete. “Now I understand,” she told me. “The conversation is a gift to your family.” When I helped found the Conversation Project, I thought we were doing this for people who were dying. I thought of my parents. I thought of “executive function” and “baggage.” What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another. Ellen Goodman, formerly a syndicated columnist for The Boston Globe, is a founder of the Conversation Project.]]> 2736 0 0 0 751 0 0 752 0 0 753 0 0 Lil http://www.sherrifillipo.com/2015/07/03/lil/ Fri, 03 Jul 2015 09:40:54 +0000 http://www.sherrifillipo.com/?p=2744

    During my several days of nesting on behalf of my son last week, I found myself in the grocery store looking for frozen collard greens (no I am not kidding, the child eats crazily healthy - anything and everything mixed into his brown rice).

    As I was pushing my cart through the shampoo aisle, the loveliest woman came up to me and remarked on the sandals I was wearing. I love them too. They are handmade and a bit odd looking but feel like butter when you put them on. I told her all about them and as often happens in the south, we moved on to other topics. I told her she was so lovely that she should do those Dove soap commercials. She blushed. She told me she was 85 and I nearly fell on top of a display. The woman is an absolute beauty. Why didn't I take a selfie with her so you could see? Because I am an old baby boomer and things like that don't pop into my mind. She then told me she had lost her husband to cancer a couple of years ago and of course I had to brief her on my  own saga. That's what happens in Harris Teeter grocery stores in the south. You just park your cart and start talking to strangers. After a few minutes more, she hugged me. I gave her my web address so she could start following me on the blog. Yes, this sprite of a woman uses the computer. Then we parted ways. Ten minutes later, I was literally standing in the frozen vegetable aisle, when I saw her running toward me. She was carrying a bouquet of flowers. Out of breath she said, "For you. They are paid for. I wanted you to have something beautiful!" And off she went. Not until I went to check out, did the cashier remark, "Did you see the card?" I had not. [caption id="attachment_2747" align="aligncenter" width="224"] "Nothing is more beautiful than the beautiful." My love always, Lil[/caption]  ]]>     2744 0 0 0 754 0 0 755 754 1 756 0 0 757 0 0 758 0 0 759 0 0 760 0 0 761 0 0 762 0 0 847 0 0     Breast Cancer and Bras http://www.sherrifillipo.com/2015/07/06/breast-cancer-and-bras/ Mon, 06 Jul 2015 13:29:28 +0000 http://www.sherrifillipo.com/?p=2767 When I read the article below, I knew I needed to share it with you on the blog. I have never had a bra that fit - thanks to that scoliosis diagnosis at 14 and then the bilateral mastectomy at 50. This is the most amazing article and photos of 'models' all of whom are breast cancer patients. I don't think I would have shared it with you if they had used healthy models. No, I wouldn't have. Click on the link at the end of the blog to read the entire article.   [caption id="attachment_2769" align="aligncenter" width="400"]Source: Tracy Birdsell/AnaOno Source:
    Tracy Birdsell/AnaOno[/caption]
     Finding a bra that fits is tough. Finding a bra that fits when you've had a double mastectomy at 28 can be nearly impossible. Popular lingerie stores specialize in the latest shapes and colors but tend to fall short when it comes to suitable options for those who have had mastectomies due to breast cancer. Dana Donofree was one such woman, finding herself with few options as a cancer survivor in her late twenties. So she started AnaOno Intimates, a line of lingerie designed for women who've had surgery related to a breast cancer diagnosis but still want something that can make them feel beautiful.

     You Won't Find These Gorgeous Bras in Victoria Secret's But You Should

       ]]>     2767 0 0 0 764 0 0 765 0 1     Doctor Who Gave Chemo to 553 Healthy Patients Faces Sentencing http://www.sherrifillipo.com/2015/07/07/doctor-who-gave-chemo-to-553-healthy-patients-faces-sentencing/ Tue, 07 Jul 2015 13:31:41 +0000 http://www.sherrifillipo.com/?p=2775 Chemotherapy Pills

    I would imagine that most people have seen this news item on television but in the off chance that you have not, I wanted you to read this. This story is almost unimaginable. From NBC news, by Anna R. Schecter, Kathryn Nathanson and Tracy Connor:
    A Michigan doctor who misdiagnosed patients with cancer and then bombarded them with unnecessary treatments will have to face his victims — who lost their health, savings and trust — when an emotional sentencing hearing opens this week. Doctor Who Gave Chemo to Healthy Patients, Faces Sentencing

     

    ]]>     2775 0 0 0 778 0 0 769 0 0 770 http://www.JoannSamelko.com 0 0     Alex, Liz, Matt and Will http://www.sherrifillipo.com/2015/07/08/alex-liz-matt-and-will/ Wed, 08 Jul 2015 13:26:48 +0000 http://www.sherrifillipo.com/?p=2783 pages of a book curved into a heart shape I have had the most wonderful gift come back to me after many years of thinking it was gone forever. Let me explain. I was on Facebook the other day (still new and mysterious to me) and found an article and video on a family that I knew  when I lived in NC. This is the family I think about when I think I have it bad and am wallowing in a pool of self-pity. Then I think about them and offer up a  prayer for Alex, Liz, Matt and Will. I met them at our community pool one afternoon (well, Alex and the two boys). Alex is 6' 7" or so I don't know but is a tall drink of water as the old folks say in the south. He had left the boys to play in the pool while he participated in a pick-up game of basketball adjacent to the pool. Because my son, Jim, and Matt and Will (twins) are the same age, they  played together and at snack time/rest period, I took the boys back to our area. Later Alex came up and thanked me, we struck up a conversation and then parted ways. I want to say it was the same weekend that we went out for Vietnamese and ran in to Liz and Alex.  I was able to meet this striking tall, thin woman with amazing black hair and a smile that would go on forever. We ended up eating together and a friendship of sorts emerged. As Paul Harvey used to say, "Now for the rest of the story." Liz was diagnosed with multiple sclerosis (MS) soon after the boys were born and then by the time they were oneish, they were diagnosed with muscular dystrophy (MD). I know. This triple whammy has kept me puzzled and praying to God about them for years. When I met them, they were all walking. Now Liz is in a wheelchair and is unable to speak. The boys, now 24 years of age, are both in wheelchairs and are having issues that go along with such a disease. Alex? Home full-time, full of energy and charm and laughter. No, I am not kidding and no, it is not fake or forced. When I worked in NC, the hospital was all of a couple of blocks from their home. So once a week, at lunch, I would scoot down the road and sit with Liz and read books to her. We plowed through the Mitford series and every now and then Liz would request something particular and we would read it. It was my goal to get her laughing at some character because to watch her crinkle her eyes and laugh and the way she banged on her hand on her leg when I had nailed someone's accent, made my day. It really did. Every now and then, she would ask me to read the same section over again and when she did, I KNEW I had done a good job. On an occasion, one of the boys would quietly wheel up behind me and listen a couple of minutes. And then they would motor away. Fast forward to 2007 and I told her I was moving. She was getting weaker and I was leaving the state and sadly one day we closed the book for good. Or so I thought. Last week I found Matt and Will's Facebook page and ask to friend them. The next morning, Alex emailed back, having read a little of my own saga, and asked if I would be willing to spend some of my time reading to Liz again. I was so happy. I asked him to make sure she wanted to and the next day he responded that she did. We are in the throes of figuring out Skype so I can sit in NY and read to her. I cannot tell you how happy this makes me to come full circle and be with this family again. Below is a video of them. A documentary is being filmed of this extraordinary family. Please watch it for me. You will not be the same afterward. The hope is that the film will draw attention to and assist with both MS and MD research.

    House of Love

    ]]>     2783 0 0 0 777 0 0 771 0 0 772 771 1 773 0 0 774 0 0 831 http://gravatar.com/peschiergeneve 0 0     Who Needs Angie's List When You Have Momma Jane? http://www.sherrifillipo.com/2015/07/09/who-needs-angies-list-when-you-have-momma-jane/ Thu, 09 Jul 2015 16:43:02 +0000 http://www.sherrifillipo.com/?p=2792 Frank

    I checked in with Momma last evening. I wanted to see how she was spending her first week out of school. I imagined she and Dad were probably on the back porch sipping on a drink and watching for the deer that come through the yard at dusk. Well, I would be wrong. Mom picked up the phone sounding winded and said, "Hello?" I asked her what she was doing; she sounded out of breath. She told me she had just climbed down off a ladder to answer the phone. "What?" At seven o'clock I thought? She went on to tell me she and Dad had decided they needed to paint the inside of the garage. Well, I think Mom thought it was a good idea and poor Dad went along for the ride. By the time he got on the phone, he said they were on their ninth gallon of paint! He sounded worn out. Mom got back on the phone and began to tell me all the virtues of this new ladder they had bought. I began to glaze over as I would rather be shot than listen to anyone talk about tools or ladders or do-it-yourself home improvements! As much as I love the red door of Talbots, I hate Home Depot orange. We talked a few minutes more and then she reminded me that they now had a BB gun ready to take out Frank. Don't be alarmed. Frank is the squirrel who has eaten his way through roughly a ton of bird seed this summer. He is so confident in his charm that he waves to Mom and Dad when he comes up into the yard. Mom is worried that her aim with a BB gun isn't going to get job done and thinks she needs something a little bigger. I just let her talk and then told her I would check in tomorrow. I don't think Frank has anything to worry about.  ]]>     2792 0 0 0 776 0 0 775 0 0     RIP Frank http://www.sherrifillipo.com/2015/07/10/rip-frank/ Fri, 10 Jul 2015 15:42:27 +0000 http://www.sherrifillipo.com/?p=2800 frank two

    You will not believe this. Yesterday, after I wrote  about Mom and Frank, I picked up the phone to check-in with her and before I could dial her number, received a text from her that said, "Frank met his own demise." And a picture of what look like ole Frank swinging from the bird feeder. I thought Mom must have read the blog though she would have to have been sitting on top of the computer when I hit the publish button, her response was that quick. So I dialed Mom. "Have you read the blog already?" "No, honey I have been up on the ladder." "Well, then why are you sending me a picture of Frank? I just wrote about him." "You did? Well, your dad and I came in and sat down to eat lunch and I looked up and said, Jim, Frank is at it again." Dad looked out the window, turned to Mom and responded, "Jane, have you noticed Frank is not moving?" Sure enough, Frank had eaten so much that he had fallen into the crook of the metal ornamental post that was holding one of the bird feeders and couldn't escape. He literally died being squeezed by "V" shape of the bird feeder post. I blew the photo up so I could see it and..well, poor Frank. Gluttony got him before a BB could.  I was going to share the photo but suddenly felt so sorry for him, I couldn't bear it and if you know me, you know I am no fan of squirrels but bless his heart...RIP Frank.  ]]>     2800 0 0 0 779 0 0 780 779 0 781 0 0 782 0 0 783 0 0     Time to Make a Call http://www.sherrifillipo.com/2015/07/14/time-to-make-a-call/ Tue, 14 Jul 2015 14:11:34 +0000 http://www.sherrifillipo.com/?p=2816 terrace july

    After eleven hours in the car, I landed back in my  beloved, Corning, around 5:30pm last evening. I can't tell you how happy I was to see those hills/mountains and to be greeted stubbornly by my two senior citizen cats.  The temp was a mild.  I opened up the door to the terrace and looked at six weeks of a wild hippy growth of flowers. They looked perfectly content to have been  left to their own devices! What I learned in my six plus weeks at the OBX was that I am much less able to walk long distances than I thought. I believe it took a trip there with completely different surroundings to make some things clear to me. And sadly, my nausea increased with such force that I had to call my oncologist and have a talk with her about medications. Long story short, I am happy, happy, happy to be home. And yet Beloved and I had a conversation over the last couple of days and  decided it was time to call in hospice care for medication management. No, I am not signing off! I, too, am learning about the services of hospice and that you can call them well before you "need" them in the traditional way we grew up talking about them. But I will confess, though I need to call them today, I hesitate. It reminds me of when I turned 40. I thought, as I lay in bed, if my feet didn't touch the ground, I was still 39. I mean, after all, when I went to bed, I was 39 so if I just stay there, I won't have to enter that dreaded middle-aged span of time. Oh, little wise one. If I had only known then what I know now. I would have jumped up, landing both feet squarely on the ground and shouted for joy at being alive (and healthy). Wish me courage as I call today.]]>     2816 0 0 0 799 0 0 800 0 0 801 0 0 802 0 0 803 http://www.facebook.com/1075704093 0 0 804 0 0 805 0 0 806 0 0 807 0 0 808 http://pilgrim125.wordpress.com 0 0 809 0 0 810 0 0 811 0 0 812 0 0 813 http://gravatar.com/raslesa 811 0 814 0 0 815 0 0 816 0 0     I Made the Call: This is What I Learned http://www.sherrifillipo.com/2015/07/15/i-made-the-call-this-is-what-i-learned/ Wed, 15 Jul 2015 14:07:17 +0000 http://www.sherrifillipo.com/?p=2828 hospice care and novice that I am, I found all kinds of services before I realized I needed to be more specific in my search criteria. After three failed attempts (I found Manhattan, then Buffalo, then finally my little neck of the woods). I have not copied the entire section on patients' questions but just reading these parts I have copied below helped me focus and fully accept that this is indeed our next step. The information that especially resonated with me I have highlighted:

    flowers

    Q: What is Hospice? A: Hospice is a special kind of care designed to provide sensitivity and support for people in the final phase of a serious illness. Hospice care allows patients to carry on an alert, pain-free life and to manage other symptoms so that their days may be spent with dignity and quality at home or in a home-like setting. Q: What services are offered? A: Hospice care involves much more than emotional support and hand holding. Although we hold a lot of hands and hug a lot of people, our service involves complete medical care. Our physicians, nurses, medical social workers, spiritual care counselors and volunteers contribute to a highly specialized interdisciplinary team. We work closely with patients' physicians. We specialize in pain and symptom management for the patient as well as counseling for the complete family. Our staff is trained and experienced in meeting the special needs of families experiencing the crisis of caring for a loved one who is seriously ill. Q: Is Hospice the same as home health care? A: No. Both home health care and Hospice provide care for people in poor health, but only Hospice provides specialized and comprehensive care, including professionals who can provide medical, emotional, spiritual and practical support. Hospice also provides full coverage for equipment and medications needed in the home. Available 24 hours a day, our nurses support the family through any medical concern. Q: When is the best time to begin Hospice care? A: If you have been diagnosed with a serious illness, it’s time to find out about CareFirst services so that you can have all the information you need to make informed decisions about your care. It is never too early to get this information, and receiving this information does not make you obligated in any way to elect our services. You can ask your physician about hospice care or call us directly at ------or 1.800.------. Q: Shouldn’t I wait until I am sicker to call Hospice? What if I am admitted to Hospice now, and can’t be re-admitted later? A: As long as your doctor certifies that you are medically eligible, you can be admitted to hospice care. You can continue to receive this care as long as you are medically eligible, even very long term. If your condition does stabilize or improve, and you are no longer medically eligible for care, you may have to leave Hospice services, but you can be readmitted when and if your condition begins to decline. Let a hospice admissions nurse help you with this determination, as some situations vary depending on your insurance coverage. Even if you are not eligible for Hospice care, CareFirst has many other services, including our Thrive program that offer Palliative Care, that may meet your needs. Q: Just because I am admitted to the care of hospice, does this mean I am giving up? A: No. Hospice is a means to help you live more fully and comfortably, even at the end of life. As a matter of fact, many studies show that Hospice care – if started as early as possible – actually increases life expectancy, decreases hospital use, decreases symptoms of all types, increases quality of life for patient and families and saves money. Q: What happens once a referral is made?  A: Once a referral has been made, an appointment will be set up to visit you at your convenience to discuss services offered by CareFirst. If you want hospice care and your doctor confirms its appropriateness, services can begin the very same day. If you wish to take time to consider the information presented, another visit can be arranged. Q: What about payment? A: Most health insurances, including Medicare and Medicaid, have hospice coverage. No one is denied care due to an inability to pay. Care for patients without insurance or with limited insurance is paid for privately and can be based on a sliding fee scale. CareFirst also raises funds to help offset costs of the underinsured.]]>     2828 0 0 0 817 http://twitter.com/ibeatcancrtwice 0 0 818 817 1 819 0 0 820 0 0 821 0 0 822 0 0 839 http://www.raushanahrodgerslaw.com 820 0     Wednesday Afternoon in Corning http://www.sherrifillipo.com/2015/07/16/wednesday-afternoon-in-corning/ Thu, 16 Jul 2015 15:30:17 +0000 http://www.sherrifillipo.com/?p=2840 carrots

    I had one of my best days ever yesterday. This is the (ironic) beauty of cancer. My dear hairstylist has Wednesday off and as do I. Well, to tell the truth I am off every day of the week but that's another story. I was feeling a little fragile after writing the hospice blog and he, bless his heart has had a long term relationship end. So, what to do? We decided to meet at 3:30 and have champagne for no other reason than that we love Corning, we are alive, and we can. So, there! I live all of two blocks from him and had stuffed a bottle and two glasses into my pocketbook and tried to walk nonchalantly down the sidewalk to get to my destination. When, what do I see half a block down the road but a dozen little school children yelling, "Bake sale! Bake sale!" Oh, no. I had a hard and fast rule in my home when I was raising my son and that was if we ever walked by or drove by anyone with a stand selling lemonade etc, we would stop and buy something. This delighted my son for years as we would go out of our way to make crazy u-turns if we found ourselves on the wrong side of the street.

    bake sale

    But guess what I had done? I had emptied everything out of my bag to fit my champagne and glasses in there. How studpid do you think I looked and felt when I had to turn to the outspoken leader and tell him, I didn't have a wallet in my purse. He looked at me incredously and smacked his head with both hands like, "Lady? Why are you carrying a purse with no money in it?" All the kids gathered around  me and it was all I could do not to shake the bottle really good and give them their first champagne shower (let the kids explain it to their parents) but I am not into wasting perfectly good, cold champage so I just shrugged my shoulders and acted like some dumb old lady who was out without all her marbles. That wasn't much of a stretch. So the afternoon drifted by. We talked and sipped and played with his two pups. At the end, we decided that he could use a little more mothering (e.g. to learn some basic recipes etc) and I could use a son who was nearer by (I need to cook for someone.) So, all in all a lovely cool afternoon in Corning. I asked the Lord a while back how I could be used with my limited resources and he has put together a perfectly lovely puzzle - reading to  my long lost friend, Liz, and cooking for and teaching my beloved hairstylist, Dustin to cook. Stay tuned.]]>     2840 0 0 0 823 0 0 824 823 0 825 0 0 826 0 0 827 0 0 828 0 0     The New York Times: The Error in ‘There’s Nothing More We Can Do’ http://www.sherrifillipo.com/2015/07/17/the-new-york-times-the-error-in-theres-nothing-more-we-can-do/ Fri, 17 Jul 2015 14:11:05 +0000 http://www.sherrifillipo.com/?p=2852 I thought this was an outstanding  follow-up  article since posting my blog on hospice care. This article was written by Dawn M. Gross. 

    Click on the link below to read the entire article.

    Angel Wings  
    There’s nothing more we can do.”

    These words are often spoken by a physician just before transitioning a patient to hospice and palliative care and are regrettably uttered only days, if not hours, before the person dies. These words leave no room for hope; they make a transition to comfort care a much-feared and often avoided final destination.

    Yet here’s the reality: More can always be done. More important, patients know exactly the “more” that they want. The real question is: Why don’t we ask?

    [pullquote]The real test for physicians, then, is being willing to meet the challenge of discovering our patient’s true wishes, the fulfillment of which may push us well outside our own professional comfort zone.[/pullquote]

    “If I had a magic wand, what is it you would wish for today?” This is a question I ask of my patients receiving hospice and palliative care.

    No one has ever asked that I rid them of their disease. Rather, I have been met with immediate replies of “make my anxiety go away” or “let me travel to see my family” and “let me go home and sit in my garden.”

    The Error in ‘There’s Nothing More We Can Do’

    ]]>     2852 0 0 0 838 0 0 829 0 0 830 0 1 832 0 0 833 0 0 834 http://www.facebook.com/1075704093 0 0 835 832 0 836 835 0 837 834 0     Catching Up (If You Can) With Momma Jane http://www.sherrifillipo.com/2015/07/29/catching-up-if-you-can-with-momma-jane/ Wed, 29 Jul 2015 13:00:32 +0000 http://www.sherrifillipo.com/?p=2866 mom2Well school is out for Momma Jane. You do remember that she signed up for a one-one-on with  a little boy who though in a regular classroom  is in a wheelchair being diapered and tube fed - - by Mom. She is a go getter. I will say the two of them bonded rather quickly, though this little guy (cerebral palsy) cannot speak he could get my mother's goat a million times with his facial expressions or a slight turn of his head. Once he pretended to need to go to the restroom and Mom gathered up all the paraphernalia  and started moving him toward the door when he touched his keypad which HE NEVER USES and this male's voice boomed out, "NOT." Meaning he had made Mom run around and get him ready just to play a trick on her. They both laughed, he kicking and waving his arms since he got her good. Remember, I told you Momma is nothing if not a good sport. So school ended and  we have moved passed the death of Frank the squirrel and after an MRI on Mom' s shoulder this week due to clearing out the back forty earlier this spring, instead of sitting on the porch as most retired folks do, remember I told you she and Dad were painting the garage? Well, I got a little text message this morning and the following pictures came through:  mom4The message said, "OCD? Naw, not me." Could someone in Raleigh please go over and sedate her with something? You might need a blow dart as she is fast and wily but for the love of my dad, give this guy a break! They have only lived here one year max. Holy cow!  ]]> 2866 0 0 0 900 0 0 901 0 0 902 0 0 904 0 0 My Oncologist is Leaving http://www.sherrifillipo.com/2015/07/22/my-oncologist-is-leaving/ Wed, 22 Jul 2015 12:52:20 +0000 http://www.sherrifillipo.com/?p=2878 The view of Cathedral Rock in Sedona, Arizona. The towering rock formations stand out like beacons in the dimmed landscape of the Red Rock State Park. Well, I never saw this coming. My oncologist of three years is packing up her family of six and they are moving to Arizona. I am as shocked as you are. This woman was born and raised in Pennsylvania - went away for med school and residency and then came back to practice "at home." But she is moving on. Like my infusion nurse did a year ago.  I am starting to get a complex. Soon will the entire hospital be empty? Even though we are in a palliative care relationship, I depend on our every few weeks meetings as I enjoy talking to her. She has become a part of my life. And now like Sabrina, my nurse, she is leaving. I feel like a part of me is leaving as well. It was an incredibly emotional afternoon for me as she and I made the official referral/application to hospice. I now no longer have any real ties to the place that has become my second home. No more labs. She even indicated that now that I am part of the hospice club that I don't need to have my port flushed any more. It can, for the first time in three years, lie dormant in my chest. I asked Beloved if I could go to Arizona several times a year for 'treatment' and he didn't say no. Maybe it has something to do with those lovely golf courses out there! Maybe a Skype call every now and then would be enough to keep me going. I am not sure. I am going to need some time to process this. I cannot tell you how much I will miss her.]]> 2878 0 0 0 851 0 0 852 0 0 853 0 0 854 0 0 855 0 0 856 0 0 857 855 1 858 856 1 892 0 0 898 0 0 Three Kinds of Care: Curative, Palliative, and Hospice http://www.sherrifillipo.com/2015/07/20/three-kinds-of-care-curative-palliative-and-hospice/ Mon, 20 Jul 2015 12:59:30 +0000 http://www.sherrifillipo.com/?p=2881 Heart made of Mediterranean sea shells, urchins and rocks on painted wood I have had several conversations with family and friends since I blogged about initiating hospice. And I can understand some of the confusion. Especially around the definitions of different kinds of care. I thought I would outline them here: Unfortunately there is no curative care for metastatic breast cancer. Curative care is exactly what is sounds like - the care that will cure whatever is ailing you - you have a sinus infection, the doctor gives you an antibiotic. Your sinuses clear and you are healed. Palliative care means a patient's symptoms are being addressed either a.) simultaneously with life prolonging treatment b.) symptomatically treating only, which is where I am now. So, when I stopped chemotherapy in March, I transitioned from a blended focus on both disease directed therapy and palliative care to now where the focus is 100% on palliative care. My oncologist now asks me about my nausea and my GI issues  as they are symptoms of my disease but she is no longer treating the disease itself Hospice care is supportive care or comfort care generally considered at the final stages of a serious disease (it doesn't have to be cancer). Some of the confusion, I think is that these treatments can  can overlap. One does not have to stop one in order to start the other. And since no one knows when anyone will die, palliation may go on for a long time as may hospice care. Or it can be quick as in my uncle whom I have written about who went from palliative care to hospice to death in a matter of weeks. The only thing that holds true is that the person's illness is serious and it is progressing to terminal. Below is a patient education sheet on this topic. I shared this back in the winter but I wanted to share it again for those who may have missed it. It is meant to be used as a springboard for conversations with both family and physician. Hospice and Palliative Care]]> 2881 0 0 0 850 0 0 Belated Thanks To So Many http://www.sherrifillipo.com/2015/07/19/belated-thanks-to-so-many/ Sun, 19 Jul 2015 15:41:51 +0000 http://www.sherrifillipo.com/?p=2890 Paint Splatter Heart on black card. Vector illustration As you know, I don't typically blog on the weekends but as I was sitting here thinking, praying, ruminating (if only it were an Olympic sport, I would be draped in gold medals) I began to think of all the kind things that people have done for me recently and then I had a pang of guilt. Though I have been pushing my dear procrastinating son to get his graduation thank yous out, I have been remiss in thanking folks for the beautiful things they have done for me. So, I am going to try and make up for it here:
    • My aunt has a friend named Hope except we all know her as "my friend Hope" because she says it every time but that's ok. When Mom, aunt and cousin came up in May, my aunt's friend Hope sent a bottle of wine and the cutest margarita napkins that you have ever seen. And though we toasted her and downed the bottle out on the terrace, dabbing our little mouths with the cute napkins, I am now realizing (after using them again Friday night) that I never thanked Hope. Thank you friend of my aunt. Though we have never met, you have been so good to her and I know you give her great friendship. Thank you for that cold bottle of wine.
    • Sylvia I knew but didn't know well in NC at the hospital that basically raised me. 25 years there. I knew Sylvia's sister better as she was a member of the Quality Department. But let me tell you Sylvia is an avid reader of this blog. And on her vacation this summer you will not believe what she mailed me. Seaglass from Italy! No, I am not kidding and if I have it right, she divided it into two little boxes - one box from the northern coast and one from the southern. When it arrived, I sat there with the glass spread out on my coffee table and was mesmerized.
    • And then my aunt (same aunt) grew up with a friend named Beth whom I have known since infancy, I suppose. She has been a prayer warrior on my behalf and off she went to Haiti on a church mission and found herself in ankle deep water picking up - you guessed it - seaglass. I think people thought she was a bit off but she kept grabbing little pieces of glass and sent them my way. I have Italy in one little glass jar and Haiti in another!
    • One afternoon a Corning Hospital work friend came over after work and we had a little wine and a little conversation. She had been here at least an hour and began talking about jewelry shopping and then pulled this ring off her finger and handed it to me. She told me while shopping for her daughters at this jeweler's store she saw it and thought of me. It is three thin silver bands, linked called a "trinity ring." I put it on and have not taken it off. I love it and it reminds me of Who is in control when I take a dip into the world of self-pity.
    • Lastly, Beloved has an administrative assistant who is good as gold. Let me tell you, recently, the night before she had surgery, she made a pumpkin roll that if I am not careful I could open my mouth wide like a snake, unhinge my jaw, and eat the entire thing. I had never had one of these until moving north, and they alone could keep me from moving back south! This lady also during chemo days would slip away from her desk and come and sit with me. As I said, a heart of gold.
    I am sure I have missed so many more. Sometimes I am efficient and get a thank you off. But my mind slips as you know and I am afraid there are others out there that I need to thank. Please forgive me if I have. As I sit here, I must tell you my heart is full.]]>     2890 0 0 0 840 0 0 841 0 0 842 0 0 845 0 0 848 0 0     Chronic Pain After a Mastectomy http://www.sherrifillipo.com/2015/07/21/chronic-pain-after-a-mastectomy/ Tue, 21 Jul 2015 13:27:18 +0000 http://www.sherrifillipo.com/?p=2896 weeping girl- cemetery statue, Italy I should not have said I thought I knew everything about breast cancer when I recently wrote about the effect that chemo can have on one's teeth as again I was shocked when I read this latest article in the New York Times about women who are suffering with chronic pain post-mastectomy. I had no idea. This is something that I have not struggled with. The term for this issue is known as  post-mastectomy pain syndrome (PMPS). For most women the pain will subside but the article indicates for 20-50% of women, it never goes away. I am floored. [pullquote]PMPS is generally defined as nerve-related pain that persists for at least three months after breast cancer surgery, though it can take up to six months to develop.[/pullquote] A physician who was quoted in the article says that the medical community doesn't have a real handle on the number of women with this syndrome because patients typically don't want to complain to their care givers. If you are experiencing pain, do not hesitate to contact your physician. The complete article is below. Just click on the link. When Pain Continues After Breast Surgery by Leslie Garisto Pfaff]]> 2896 0 0 0 Hospice Referral: From Beloved Oncologist to Benevolent Stranger http://www.sherrifillipo.com/2015/07/23/hospice-referral-from-beloved-oncologist-to-benevolent-stranger/ Thu, 23 Jul 2015 12:37:54 +0000 http://www.sherrifillipo.com/?p=2923 US stamp circa 1999 US stamp circa 1999[/caption] By the time I drove through those mountains for the last time to see my oncologist yesterday, the office had already made the referral to hospice and they were calling me on the phone. I didn't catch her name but her voice was smooth as molasses and I was instantly calmed. She told me all the great things hospice could do for me now and also indicated that they would be here for Beloved long after I was gone. I had forgotten that part of their care though I had read it somewhere before. What a comforting piece of information for me to have tucked away, knowing that they understand the sting of death doesn't end with the person dying. The woman gave me a phone number what was the only number she told me I would need. 24 hours a day, seven days as week. For any all needs - medication, counseling and so on. That too was such a relief. I have placed it on the  refrigerator for any and all to see and use over the next few (many) months. Whenever the weather turns just a bit, I become reflective and indeed I awoke this morning with a cool steady breeze blowing into my bedroom window. I have been sittng in the family room watching the tree limbs sway back and forth. The terrace door is open and two fat cats are lounging halfway in, halfway out - never ones to commit completely to anything unless we are talking food. I have spent most of the morning staring out the windows taking this all in. So I wait. Today is reading to Liz day but other than that, I am waiting on hospice to call. (If you didn't read the post on Liz, would you consider doing it? I have linked that post to her name. This is an extraordinary story.) Hospice's next step is to do a home visit (I wish it was the week my friend comes to clean but alas it is not.) The nicest thing so far that I am learning is that hospice comes to me. I no longer have to dress, attempt to put on mascara and brace myself for a long trip back and forth to the hospital. As my energy continues to wane, it is the nicest service they have offered to date.]]> 2923 0 0 0 859 0 0 860 http://cancerqueen.me 0 0 861 0 0 862 0 0 863 862 0 864 861 1 880 864 0 893 0 0 My First Visit From Hospice http://www.sherrifillipo.com/2015/07/24/my-first-visit-from-hospice/ Fri, 24 Jul 2015 14:01:57 +0000 http://www.sherrifillipo.com/?p=2940 Photo of a miniature house holding in hands

    My hospice nurse,  Melissa, came and made her first visit yesterday. I fretted about the apartment, plumping pillows, dusting counters like I was having a dinner party. I don't know why. I guess of all the people I have ever had come to my home in the past 55 years, hospice has not been one of them! We ended up spending two hours together and I am not sure why except I had a million questions that I wanted answered,  more from a curious nursing perspective than patient. At one point, she looked at me and said, "Most people don't want nearly this much information this soon!" I told her I did. This is an area of nursing/healthcare that is a total mystery to me and I was determined to draw back the curtain and get some answers by dern! Truly, it was what I would call an intake assessment. Basic demographic information from me, though we did tip toe around delicate issues of death (Did I have a 'Do Not Resuscitate' Order? Do I have a healthcare proxy?). I believe she would go as far as her patient would let her. Some of the things I wanted to know included:
    1. Can you use my port for medication? No, they do not use the port. They will provide medication by mouth until the swallowing reflex is gone and then they transfer to a liquid mixture that they say works well when given via a syringe (no needle on the syringe) into the back of the throat that slides down and does the trick.
    2. Will there be morphine in the home (the nurse in me goes, "WHAT?") and the answer is yes.
    3. I asked her if my neighbor could administer it and the hospice nurse said she could. Then I shouted over my terrace to where my neighbor was sitting on her terrace and asked her if she would like to give me morphine when the time comes and of course she said, "I would love to but only if you will share! You know those old Bianca commercials where they spritz a little mouth freshener into their mouths?" She said she would just take a little. NO, she is not serious. She just knows how to make me laugh in tense situations.
    Things I learned:
    • Patients are placed on teams of which there is a nurse, social worker, spiritual liaison and host of others. There is a weekly interdisciplinary team meeting where you are the center of attention and the team discusses how you are doing, they review the meds you are on etc. I LOVE this idea. We do it in the hospital but not nearly enough. Everyone is together and everyone is looking at you from their professional perspective. Think holistic.
    • Everything is conducted here in the home which I mentioned yesterday.
    • When I begin to have difficulty with activities of daily living, there is an LPN who can come to the home an hour a week and assist with bathing, etc.
    • Physical therapy is a benefit (I am working on some way to get a massage out of this but I can't quite figure how to word my need for one to make it sound medical!)
    • As a nurse I am used to the question (ten thousand times over), "One a scale from 1-10, how would you rate your pain?" Hospice has a different question which she said would be asked every time and it went something like this, "What is the one thing today that is most on your mind?"
    All in all an oddly pleasant afternoon with this benevolent stranger. Next up, the social worker comes in on Monday. Stay tuned. All is well. Cats are curled up. The sun is shining. The temps are cool. I am drinking coffee.  ]]>     2940 0 0 0 865 http://tellingknots.wordpress.com 0 0 866 865 0 867 0 0 868 http://tellingknots.wordpress.com 866 0 869 868 0 870 0 0 871 0 0 872 http://morethancancer.wordpress.com 0 0 873 0 0 874 http://pilgrim125.wordpress.com 0 0 875 0 0 876 870 1 877 874 1 878 875 1 879 0 0 882 0 0 883 0 0 889 0 0     A Nurse, A Social Worker and A Chaplain Walk Into My Apartment (No, this is not a joke!) http://www.sherrifillipo.com/2015/07/27/a-nurse-a-social-worker-and-a-chaplain-walk-into-my-apartment-no-this-is-not-a-joke/ Mon, 27 Jul 2015 10:14:11 +0000 http://www.sherrifillipo.com/?p=2950 Stethoscope and a silhouette of the heart and ECG. 3d

    I was minding my own business talking on the phone Friday morning after posting that the hospice nurse had stopped by the day before. I was told that the social worker would be coming on Monday (not sure why but she is on my 'team' - I am by the way on the green team :) when all of a sudden I had to put Momma Jane on hold to answer a hospice call coming in. They are nothing if not efficient. I had already talked to the triage nurse that morning who was checking in to see if my meds were current and if I needed anything...when lo and behold the chaplain was on the phone asking if he could drop by. I feel like I have stirred up a nest of something. I would say a hornets' nest but that sounds so negative and these folks are as kind as can be. Then the nurse and social worker called and asked if they could visit this afternoon. Wow. Sure. I don't have that much to say. You can only talk about nausea for so long. Well, the sweet chaplain had a fender bender and he was late so they all three ended up arriving at the same time! All I could think of was, "Well, it seems like I should be offering cheese and crackers or something...." They each had their own agenda with questions  they needed to document to make me official. But let me tell you how amazed I was when I was asked that question I told you on Friday that they said they would ask, "What is on your mind today?" And I answered again, that my son was on my mind. That he had some things he needed to do to fully get settled into his job and new apartment. Then we transitioned to  how he was taking my disease process and I told them I didn't know. Do you know what the social worker said? "I can call Greensboro and make a referral so that he can have someone to talk to now AND after you are gone." It was a DEFINITE need I had that I didn't even know! A weight lifted off me that I didn't know was sitting squarely on my shoulders. Someone in my home town was going to be there for my son should he need someone to talk to that understood death and dying.  God bless Hospice! If they don't do another thing, they have already won in my book. Taking care of my only child 12 hours away. I am humbled. I am floored. Later as we all talked, I mentioned how sedentary I was and how difficult was to sometimes do the smallest errands. Guess what? Hospice has volunteers who will run errands for you. Anything from groceries, to the pharmacy to whatever you need! They match you up with a volunteer who lives near you and then the two of you work out whatever needs to be done. How fantastic is that? The chaplain prayed over us and our new relationship (if you don't want that, you don't have to have that - I told him sign me up for double) and then they were off. After I apologized for taking so much of their time and being relatively 'healthy' they all three immediately dismissed it saying, "We  don't often get to establish any kind of relationship with our patients as they (or their families) call us so late in the process. This is the greatest thing ever - to sit here and actually get to know someone without imminent stress or crisis." I am already happy I started this journey with them. Amen.]]>     2950 0 0 0 888 0 0 890 http://pilgrim125.wordpress.com 0 0 891 0 0 894 0 0 895 0 0     New York Times SundayReview: Helping Patients and Doctors Talk About Death http://www.sherrifillipo.com/2015/07/28/new-york-times-sundayreview-helping-patients-and-doctors-talk-about-death/ Tue, 28 Jul 2015 14:25:38 +0000 http://www.sherrifillipo.com/?p=2965 Elderly care

    Below is an article from the New York Times. I believe it dovetails nicely with the blogs I have been posting that have attested to the wonders of hospice care. Click on the link below to read the entire article:
    Medicare announced plans this month to reimburse doctors for talking with patients about what treatments they want — and don’t want — toward the end of life. This sensible, long-overdue proposal is likely to have a very wide impact. About 80 percent of people who die in the United States each year are covered by Medicare, and Medicare policies are often followed by private insurers, some of which already pay for these advance-planning conversations... Researchers at the Johns Hopkins School of Medicine in Baltimore used a national survey containing exit interviews with the next of kin of nearly 2,000 cancer patients who died between 2000 and 2012. Patients who had end-of-life discussions with doctors and those who created living wills, which describe the kind of care a person should receive, were most able to avoid having treatments that they did not want imposed on them. Patients who relied solely on designated health care proxies to make decisions if they were incapacitated were often subjected to aggressive last-minute care.

    Helping Patients and Doctors Talk About Death

    ]]>     2965 0 0 0 896 0 0 897 0 0 899 http://maesday.wordpress.com/ 0 0     New York Times: When Cancer Triggers or Hides an Eating Disorder http://www.sherrifillipo.com/2015/07/30/new-york-times-when-cancer-triggers-or-hides-an-eating-disorder/ Thu, 30 Jul 2015 13:20:53 +0000 http://www.sherrifillipo.com/?p=2981 paper chain figures concept for anorexia and overwieght or eating disorder with one skinny and one fat figure I never cease to be amazed at the myriad of ways our minds and bodies react to the diagnosis of cancer and the onslaught of chemotherapy. My stepdaughter sent me this article and it is something I would have never put together but as she remarked, "It all made sense to her after I read it." I agreed. The article is about weight loss or weight gain while going through treatment. I have to admit two years ago I had the infusion team stop giving me steroids pre-chemo and then later (just last week) I was offered them again to assist with my ongoing nausea. Vain that I am, I refused them. I am at the heaviest I have ever been and I will not add to it. Adolescent thinking I know but I don't care. Click on this link below and learn yet another issue related to cancer and treatment. [pullquote]“During your cancer treatment, you have no control over your body — you give up your body to your doctor,” said Ms. Emmets, who wrote about her experiences on the website The Manifest-Station. “You are willing to do it because you want to live. Food restriction is the one thing that you can do to have some sense of control when everything is chaotic.”[/pullquote]     The article, When Cancer Triggers (or Hides) an Eating Disorder from the New York Times, written by Sophia Kercher.]]> 2981 0 0 0 905 0 0 906 0 0 One Day in the Life of a Headache (With a Side of Nausea) http://www.sherrifillipo.com/2015/07/31/one-day-in-the-life-of-a-headache-with-a-side-of-nausea/ Fri, 31 Jul 2015 14:22:10 +0000 http://www.sherrifillipo.com/?p=2996 C-clamp in a horizontal image I have been having a headache constantly for the past three days and if you have metastatic cancer, you know where that pain takes you. Not to "Oh I must be having a little stress," but to, "Call in the family, I'm going down. It's moved to the brain." It's just typically where cancer takes you after it as shown you what it can do on its own while you are trying to live your life. Remember when I recently blogged about one's teeth and how chemo can cause them to fall out of your mouth? Like two of mine have? Well, I have been sitting here with a broken tooth for a few months and it dawned on me that it was on the same side of my headache. So while I had nothing to do but sit and stew, I decided the tooth had to be the cause of my headache. Off I went yesterday feeling like a sleuth, loving that I can self-diagnose with the best of them. They x-rayed the offending tooth and the dentist came back in and said, "Rarely do I have  to say this but 'I am sorry but unfortunately it is not your tooth.'" I smiled because that is so funny for a dentist to say! Oh my. I thanked him and off I went. Luckily this healthcare organization is designed after the Mayo Clinic model where the hospital and the physicians'' offices are all under one roof. So I went up one floor to my oncologist's office and asked could I be worked in. When you say you have headache it's like running into the ED and exclaiming you are having chest pain. And here is the rub: being under the care of hospice, I called them prior to the dental appointment and was given the green light. When I stood outside the oncologist's door and called hospice again, I was told seeing her would constitute aggressive treatment and that would not be covered. While hospice could offer me morphine on the spot for the pain I was having (either I was quite exaggerative of the level of pain or due to the population, that is their go-to choice of pain reliever!) I could not opt for treatment if that is what the oncologist suggested. This is important to note to those unfamiliar with hospice like I am: you can go off and on hospice without penalty. And from what I understand people do that commonly. So, while I could go and have an appointment with my oncologist and she could offer pain relievers, I could not have an MRI of my brain. MRI = aggressive treatment under hospice regulation. Though I tried to defend the thought that radiation = shrinkage = palliation, it is not seen that way with hospice. So, one can do whatever one wants. One just has to be willing to unregister and re-register with hospice if something you want to do falls outside the regulations. A long-winded tale I know. But I thought it was an interesting one for newbies like me to work through. In the end, we (Beloved, oncologist and I) decided to wait another 48 hours and watch the headache. Take a little Percocet if the pain becomes worse and check back in on Monday. And on a side note, we have added a scopolamine patch for my nausea. So, if anyone is headed out on a cruise and needs another guest, I am ready for the high seas!]]> 2996 0 0 0 916 http://www.darngoodlemonade.com 0 0 907 http://sherrifillipo.com 0 0 908 0 0 909 0 0 910 0 0 911 0 0 Momma Jane and Her Hummingbirds http://www.sherrifillipo.com/2015/08/03/momma-jane-and-her-hummingbirds/ Mon, 03 Aug 2015 14:42:46 +0000 http://www.sherrifillipo.com/?p=3003  hummingbirdNo, she is not all about the squirrels though she claims Frank's cousin is now hanging upside down swinging from her hummingbird feeder sipping on the sugar water when his little throat gets dry from gorging on her birdseed....but today is all about the hummingbird. Last week I got a call from Momma Jane and she said, "Your daddy has gone and done it now. Guess where we went Friday night?" If you know my mother and father, you would need a multiple choice answer for that question as the answers could vary widely from  a.) a rodeo b.) out in a farmer's field picking cotton for her crafts c.) sitting in a swamp watching migratory birds flying south  or d.) twisting barbed wire into wreaths and sticking some of that aforementioned cotton in to them for decoration. Although all four of these things are true, none of them happened last Friday.

    For you see, they went about an hour south of Raleigh to hear a woman spend two hours on.....you guessed it hummingbirds! Mom came back all a twitter (yes, I used that word on purpose) and had to tell me some fascinating facts about those little darlings:
    • they never use the same nest twice
    • they use spider webs as glue to hold their little nests together!
    • when building the nests, the mothers line the inside of the nest with insects so the babies will have something to munch on until they can learn to fly at breakneck speed
    • they migrate to South America and upon return to the north, the male hummingbird comes back first apparently to watch Dancing With The Stars as they can be seen practicing all their suave moves for days/weeks until the ladies stroll in; then the females picks her suitor based on whose dance she likes best; I can not attest to the fact that they are or are not awarded little tiny trophies to the winners
    • their primary predator is the black snake! he will pretend to be a stick; they will land on him to rest a minute and then the next thing they know, they are sliding down the inside of that old snake; when I told Mom to go out there and kill every one one, she shrieked, "No, Sherri. Black snakes kill copperheads! You can't do that." Oh, right of course.
    • we only have the ruby-throated hummingbird on the east coast. Apparently you all out there on the western side of the US, have all kinds.
    [caption id="attachment_3009" align="aligncenter" width="300"] Lambs' Ears[/caption] Then she got off on other interesting but quasi-related information. Did I know for example that "country folk" and she wouldn't get any more detailed with me that, used spider webs as suture to hold together wounds way back in the day; I find that laughable but she swears it is true. Then she said, "And you know those little lambs' ears plants? (see photo above.) Well, they used those as bandages. But you can't use this information because it doesn't have anything to do with hummingbirds." Ever the editor. Watch me.

    ]]>     3003 0 0 0 913 0 0 914 http://maesday.wordpress.com/ 0 0 915 0 0 917 0 0     Going to the Abbey http://www.sherrifillipo.com/2015/08/04/going-to-the-abbey/ Tue, 04 Aug 2015 14:37:59 +0000 http://www.sherrifillipo.com/?p=3016 ancient ruins of military base in RIga I was sitting in my comfortable chair Sunday afternoon letting my mind wander as it often wants to do. And I began to think about something I have held a long fascination for: monasteries, abbeys, and convents. I am not Catholic but the thought of pulling oneself away from the trappings of this world and living away from it deeply fascinates me. I have often wanted to go to one and spend time there though I haven't thought about it in many years - until Sunday afternoon. So, I googled it right? I mean, how else to learn about those living off the beaten path except by using the internet to find them. The irony isn't lost on me. While you would be amazed at the number of places all around the world that claim to be or really are places of spiritual renewal, I had a pretty narrow view on what I was looking for. And guess what? I found it one hour and ten minutes from my apartment door. It is the Abbey at Genesse. They are of the Trappist monks. A monastery that allows people of all denominations to come and have a time of silent retreat. For a day or several. Individually or in groups. I signed up on the spot. Beloved will be away on business next month and I thought it was the perfect time to fulfill a long held dream. It is all quite simple. You may attend services with the monks, you may have one pray with you privately while you are there and also if you are so inclined you may make confessionals. They serve you three meals a day. And otherwise you are on your own. To be led by the Holy Spirit. Nothing structured. They suggest reading by the pond, walking the River Road which houses various properties, availing yourself to their library - but it all must be in silence. There is one room at the front of the house that is called the "Speaking Room." I tell you I cannot wait. Besides Bible and paper journal, I would like to take one book to read. What would you suggest? I will return to this topic after my time there. Three days and two nights. I think something incredible will happen there and I don't mean healing. But something special.]]> 3016 0 0 0 919 0 0 920 0 0 921 0 0 922 0 0 923 0 0 924 0 0 925 0 0 927 919 0 928 920 0 936 http://www.riverbirchvineyards.com 0 0 937 0 0 948 0 0 Hospice Visit http://www.sherrifillipo.com/2015/08/07/hospice-visit/ Fri, 07 Aug 2015 14:00:47 +0000 http://www.sherrifillipo.com/?p=3023 Pushkar Camel Fair - decorated camel during festival in Pushkar India Thanks to everyone for collectively worrying about my headache! Must be the strength in your prayers because thankfully the headache has left. Nausea? That nemesis will be with me til the end. While the scopolamine patch might be great for some, the night I put it on, I dreamed I was in the desert riding camels, the dry mouth was so terribly intense. I liked the idea of adding it to my arsenal but sadly it did not work for me. Maybe it might work for you? Today was my first visit with the hospice nurse since they performed their admission assessment last week. I felt so guilty about being so "well" that it was all I could do not to limp to the door so she would know that I was really sick! Ha. What I wasn't prepared for was the actual taking of my vital signs. I told her I was fine and she said she still had to do it, so off we went. It seemed silly but I understand regulations. Later, we discussed my nausea and she said she had just been to a conference led by a pharmacist who was a firm believer in the old drug Haldol. It has had a bad reputation over the years due to some of its side effects but this nurse after hearing the pharmacist speak wanted to try it, as in her opinion my nausea was 'anything but under control.' (Can't disagree with her on that.) I am going to have to get used to hospice and their perspective on patient care. It makes sense but it is a different patient care model. They are all about the pain control. And thankfully they are liberal in their prescribing, advocating, and managing of it. There will come a time when I want them rigorously advocating on my behalf. For now,  I still have enough curious nurse in me that I want to know the 'whys' of my headaches and today my backache. That is a not a hospice-type question. My nurse suggested I take a pain pill and a nap. I guess there are worse plans of care...  ]]> 3023 0 0 0 941 0 0 943 0 0 991 0 0 Dr. Carolyn Kaelin, Breast Surgeon Dies of Breast and Brain Cancer http://www.sherrifillipo.com/2015/08/05/dr-carolyn-kaelin-breast-surgeon-dies-of-breast-and-brain-cancer/ Wed, 05 Aug 2015 17:38:58 +0000 http://www.sherrifillipo.com/?p=3025 Twenty years ago, Dr. Carolyn M. Kaelin became founding director of Comprehensive Breast Health Center at Brigham and Women’s, the youngest woman to hold a post of that distinction at a top Harvard teaching hospital.

    With every death I learn about from breast cancer, I become sadder and sadder. The article below is tough in that this surgeon not only had breast cancer but brain cancer as well. Remember though when breast cancer metastasizes and goes elsewhere (lung, liver, bone, brain) it is still considered breast cancer. If you were to take cells from one of those other areas, you would find breast cancer cells there. This woman actually had cancer of the brain in addition to breast cancer. It all makes me so sad. Click on the link to read the article.
    Distinguished as much by her empathy as by her proficiency as a surgeon, Dr. Carolyn M. Kaelin would often hold a breast cancer patient’s hand as they sat side-by-side, both crying as they discussed a devastating prognosis. “My practice sees a disproportionate number of young healthy women with breast cancer,” she told the Globe in 1999. “I see myself in many of these women.” Then in 2003, she took off a cycling shirt after training for the Pan-Mass Challenge and noticed “this tiny pulling in of the skin,” a flaw only a top surgeon might see. In that moment she crossed the doctor-patient divide in her own specialty. Diagnosed with breast cancer at 42, she began to infuse her work with a patient’s perspective... Dr. Carolyn Kaelin, 54; inspiration as surgeon, patient by Bryan Marquard, The Boston Globe
    ]]>     3025 0 0 0 929 0 0 930 0 0 931 0 0 932 0 0 933 0 0 976 929 0 979 976 1     The Genesee Diary: Report from a Trappist Monastery http://www.sherrifillipo.com/2015/08/06/the-genesee-diary-report-from-a-trappist-monastery/ Thu, 06 Aug 2015 13:06:22 +0000 http://www.sherrifillipo.com/?p=3030

    Thank you to everyone who commented, called, or texted me with the title of a book I might take along with me next month to the monastery. The book I have chosen gave me goose bumps when I listened to my cousin (a teacher) outline on a voicemail this writer, Henri Nouwen. I had never heard of him but my cousin gave many of his works high praise. She got a kick out of reading my blog about taking the trip next month; while reading it, this author's name came into her head. She pulled a few of his books off her shelf, opened up a couple and discovered that the monastery in upstate New York is where this author spent seven months! Unbelievable! Though she gave me a list of many of his writings, once I realized that he had written The Genesee Diary (pronounced Gin-a-sea ) it was decided. I had to choose this one. So the long and short of Henri Nouwen is that he was a Dutch priest, professor and writer, born in 1932 and died in 1996. During a sabbatical he came to stay with these priests in upstate New York for seven months and kept a diary/journal of his time spent there. This couldn't be any more perfect for me. And to think I had never heard of him until my cousin handed me the thread that wove this altogether!]]>     3030 0 0 0 934 0 0 935 0 0 938 0 0 939 0 0 940 0 0     A Sunday Field Trip: Lessons Learned http://www.sherrifillipo.com/2015/08/10/a-sunday-field-trip-lessons-learned/ Mon, 10 Aug 2015 18:16:42 +0000 http://www.sherrifillipo.com/?p=3048 old wooden pier on blue lake water I'm not sure why we decided to go on a field trip yesterday but we did. We drove about a half hour to the town of Hammondsport, NY another town on one of the finger lakes. We had not been there before and it was a cute miniature version of Corning with shops and restaurants that worked their way down main street to the shores of Keuka Lake. I didn't realize how the town was laid out and as soon as I glimpsed a bit of the lake, I wanted to walk down to it - ever magnetized by the sight of water. We walked down the hill and sat on a bench. There was actually a roped off part of the lake where a few swimmers had been doing laps. I felt the water and I will attest to the fact that it is warmer than the OBX water. On our way back up the hill toward the car, I got winded, worn out. Later Beloved told me when I mentioned I wanted to go down to the lake, red flags went off in his head as it not being a good idea. I, as of yet, don't have these flags alerting me to dumb ideas and I paid a price for my small jaunt. By the time we worked our way up to the car, I was nauseated (surprise) and not in the mood for lunch. We drove back home not bothering to stop at our champagnery as I call it in  the next town over. I just had to get home. All of this makes me sad. I fell asleep on the couch during the evening news, woke up this morning and felt out of sorts. I read my devotional and of course it hit the mark as it often does, "Energy and time are precious, limited entities. Therefore you need to use them wisely, focusing on what is truly important." I felt like I had been told. For the first time in a very long time, after I read my devotional, I crawled back in bed and slept another five hours this morning. When people talk about battling cancer, I have never embraced that phrase as there is no battle to it when it is stage IV, terminal. It is going to win every time. One just needs to learn to live within its constraints which I am trying to do. Some days with success, other days like yesterday not so much.]]> 3048 0 0 0 946 0 0 945 0 0 944 0 0 947 0 0 950 947 1 951 946 1 973 0 0 A God Wink http://www.sherrifillipo.com/2015/08/11/a-god-wink/ Tue, 11 Aug 2015 19:35:09 +0000 http://www.sherrifillipo.com/?p=3054 Birthday candles on blue background Although I didn't need to go today, my oncologist who is leaving at the end of the month put one last appointment on her schedule for me in case I felt I needed it. I did. We spent about ten minutes wrapping up our three year relationship and the last five minutes discussing some increased symptoms of the cancer. In the last 72 hours, I have begun to sleep more, I want to lie down more and my nausea has further increased. The last oddest phenomenon is that both hands tingle and are numb now. I was used to it somewhat when I was on chemo but since I have been chemo-free five months, this is indeed a strange thing to be happening. She told me that the increased fatigue and nausea is all classic progression of the disease along with a phenomenon of me not wanting to be around people much any more. I read that in the hospice material that was given to me a couple of weeks ago. They consider it a turning inward and a preparation for death. Sounds so mysterious that I find it difficult to write. But it is true. I just want to be tucked away in my apartment, lying down and thinking. Maybe in preparation for the next step? When I asked my oncologist when she was physically leaving, she told me the date which happened to be her birthday and then looked down at my chart and said, "Oh my goodness! I have known you three years and didn't realize we have the same birthday!" That was the only thing that made me smile today. As Momma Jane calls them, that was a "God wink." Amen.]]> 3054 0 0 0 952 0 0 953 0 0 954 0 0 955 0 0 956 0 0 957 http://Facebook 0 0 958 0 0 959 http://maesday.wordpress.com/ 0 0 960 0 0 961 0 0 962 0 0 963 0 0 964 0 0 970 0 0 974 0 0 977 970 0 984 0 0 Gifts in All Sizes http://www.sherrifillipo.com/2015/08/12/gifts-in-all-sizes/ Wed, 12 Aug 2015 15:09:59 +0000 http://www.sherrifillipo.com/?p=3060 gift heart

    Even before cancer, I wanted to be that woman who would rise at dawn and take a run before work. I have never done that before in my life and I am certainly not going to try now. But I have always through the years prayed for energy. The joke in my family is that my best time of the day is between 10am-2pm. I can't get up early; I don't go to bed late. I think I missed my calling and should have been a cat. As a collector of seaglass I am smart enough to know that the early bird gets that special piece of glass, but nothing short of dynamite can get me out of bed before a reasonable hour. In my younger life, the hardest part of being an OR nurse with a 7:00am start time (and that meant in scrubs, standing in your OR suite ripping open sterile items in preparation for a 7:20am-7:30am 'cut' time as we called it.)We lived so close to the hospital that I could sleep until 6:20am, race out the door and slide into the OR on time. Why did I care how I looked? My hair would be covered, 2/3 of my face by a mask, the scrubs were all wrinkled anyhow. I managed to do it for a while. Now I am tired for a different reason. One with a little more sympathy attached to it. The list of drugs I am on (and you too probably) is an impressive laundry list of things. After Hospice added the Haldol for nausea I can now barely close my Ziploc gallon bag of meds. Never in my life did I think I would end up here. Today's devotion (I know I quote her way too often but she is often so on the money for me) helped ease me back on the couch and rinsed away my guilt for being tired and slow: "Do not compare yourselves with others, who seem to skip along their life-paths with ease. Their journeys have been different from yours and I have gifted them with abundant energy. I have gifted you with fragility...accept this give as a sacred treasure: delicate yet glowing with brilliant light....rather than struggle [against it] allow me to bless you richly through it." I felt better after reading it. I will never run that 5k, heck I will no longer walk to Wegmans.  I have time. I am not rushed. Now I just need to remind myself that I am being blessed through it. An odd gift but  I see how His gifts come in all shapes and sizes. Fragility? Who would have ever thought of it as being a gift?]]>     3060 0 0 0 965 0 0 966 0 0 967 0 0 968 http://cancerqueen.me 0 0 969 0 0 971 0 0 972 https://plus.google.com/106368806045752616202 0 0 975 0 0 978 972 1     A Legacy Video, Thanks to Hospice http://www.sherrifillipo.com/2015/08/13/a-legacy-video-thanks-to-hospice/ Thu, 13 Aug 2015 13:55:57 +0000 http://www.sherrifillipo.com/?p=3070 movie camera

    If you ever want to see me wail like a baby, ask me about my son - the son that cancer is making me leave far sooner than I am ready to part with him. In that same breath, I understand that many of you, my friends, are preparing in your own way to leave many more children (grandchildren) and many of them much, much younger than my 24 year old. It doesn't make the pain or the sorrow any less does it? Last Friday, the hospice chaplain paid his first solo visit with us. Beloved was able to be here. Remember, hospice comes to you, you don't have to go to them. So, while we sat in our family room we talked of death in generalities - things that wouldn't cause one to break down and weep in front of a total stranger. I was cognizant that he had led a memorial service that morning and I did not want him to go home to his wife and tell her how well the service went but how wild the home visit turned out to be! (I don't want to get a reputation too early with hospice!) But there is a service that they offer that I wanted you to know about. I cannot verify that all hospices do this but if they don't, they should. He asked me if I would be interested in leaving what he called a "legacy video." THAT'S when I burst into tears. I am afraid that as young as my son is by the time he is 40, 50, 60 I will be just a dim light, a hazy memory of a woman who loved him but any details about me would be long gone. Once Beloved handed me a tissue, and I composed myself I signed up on the spot. The chaplain told me I could do one or a series of them. I cannot tell you how yet another weight lifted off me. I do not know the details of how one does this but he, my sweet little chaplain, is putting it into motion. God bless hospice.]]>     3070 0 0 0 980 0 0 981 0 0 982 0 0 983 0 0 985 0 0     Choosing a Memorial Site: Corning's Walking Bridge http://www.sherrifillipo.com/2015/08/14/choosing-a-memorial-site-cornings-walking-bridge/ Fri, 14 Aug 2015 14:07:01 +0000 http://www.sherrifillipo.com/?p=3079 walking bridge

    When I first learned three years ago that I had terminal breast cancer, I was adamant that I did not want any kind of funeral. I don't know why. As time has marched  on (and I mean marched on at a clip) I have had a change of heart and have decided that at some point after my death, my family should/could/would hold a memorial service. I had touched base with my son as I have learned that some people need/want to have a tangible place to go to - to mourn or just have one last physical place to be linked with a loved one. My son, however, told me he did not need that kind of place (I would have guessed as much). So, I decided I wanted to be cremated and scattered along the banks of the Chemung River that runs behind my apartment, into the Long Island Sound where I hunted for seaglass for hours upon hours, in the OBX near my periwinkle palace and then last but not least behind my mother and father's house in a creek. (She is the one who will need a specific place to go to. I know her all too well. Momma Jane is just that way.) Up until I met with the chaplain last week, I had not sorted out how folks from seemingly all across the east coast would get to a service (if they wanted to). And up he piped with, "Have you ever thought about having a service here for your Corning friends?" I had not. My thought would be that family and friends that could, would go to the OBX in NC. Having two services had never dawned on me. Like those folks who have two weddings. I hadn't even dreamed of such a thing. But as he said it, it made perfect sense. And there  last Friday afternoon, we laid it all out. I asked the Hospice Chaplain if he would officiate. He said he would. I asked if we could have it on the walking bridge behind my apartment. And he thought that was a great idea. And then they (whoever 'they' are) could scatter some ashes into the river. I just asked them to please determine the direction the wind is blowing before the service. Having my ash blow back into your face would embarrass me tremendously.]]>     3079 0 0 0 989 0 0 990 0 0 988 0 0 992 0 0 994 0 0     The Girls of August http://www.sherrifillipo.com/2015/08/17/the-girls-of-august/ Mon, 17 Aug 2015 15:43:39 +0000 http://www.sherrifillipo.com/?p=3094 aug

    Oh what a weekend I had! The Fillipo side of the family celebrates five August birthdays and for the past few years, we have had a Girls of August birthday party. I think it is one of the most glorious times of the year. But I  may be just a bit biased as I am one of the five in that pack! So, starting last Friday afternoon, the first wave arrived and we had pizza, salad and cold margaritas for eleven while we waited on the young folks to get off work in Philly and drive in to Corning (four hours door-to-door). How, might you ask could I host such a thing? I didn't. Guess who drove 12 hours to be my proxy-hostess? Momma Jane! Yes, that's right. While I sat off in a corner, she wined and dined my Fillipo family (they know her all and in fact they are the ones who came up with the moniker "Momma Jane" not me!) We had family sleeping all around town in hotels but we also ended up with kids on air mattresses on the couches... Saturday, we added four more to the mix and off they went to blow glass at the museum. People came and went and it was a ball! Saturday night, Beloved grilled steaks and we had dinner for 18 with presents, cake and frivolity. Sunday morning people started to go back through the hills to Philly. We still had enough Fillipos to parade up and down Market Street grabbing deals at the stores. By Sunday evening, we were down to five and made quesadillas with the leftovers and watched a little TV. The last of the two young ones went up the street for a night cap at a microbrewery while the three old folks (Beloved, Momma Jane and I)  hobbled off to bed. Monday Morning? Just me and Momma Jane. Sitting quietly. Sipping coffee. Regaling all the weekend antics of this family. Oh, it was fun and loud and exhausting but I can safely say, a good time was had by all.  ]]>     3094 0 0 0 995 0 0 996 http://www.riverbirchvineyards.com 0 0 997 http://twitter.com/debsmithbeach 0 0 998 0 0 999 0 0 1000 http://maesday.wordpress.com/ 0 0 1002 0 0 1003 0 0 1004 0 0     One Ya-Ya Coming Through http://www.sherrifillipo.com/2015/08/18/one-ya-ya-coming-through/ Tue, 18 Aug 2015 14:41:12 +0000 http://www.sherrifillipo.com/?p=3104 nurse Momma Jane just left for NC with a large coffee in her hand. She is happy and tired just like me. We spent the day yesterday doing errands up and down Market Street and then turned in early for the news and an evening margarita with snacks. Beloved had an evening meeting (well, at least that's what he said - ha) and came slowly walking in around 9:00pm. Doing a quick turnaround today as one of my ya-ya's is flying in this evening. If you didn't read about this group of friends, click on the link. She and I have been friends since back in the day of us educating/orienting/teaching/tear wiping every new perioperative nurse that entered one of our five hospitals. Yes. What a job. Bev is always what I call a nurse's nurse. She is the one who came to Virginia post-mastectomy and cared for me and my four JP drains for days after surgery. She showered me, washed my hair and was there for me when I took that long, dreaded, hesitant first look at my absent breasts and VERY apparent scars across my chest.  I cried on her shoulder standing there in the bathroom and she is the one that told me that at some point everything was going to be alright. I can never repay her for all that  she did which allowed Beloved not to have to be exposed to my post-surgical body sooner than he was able. You see, we had been in that state for less than six months. I knew no one  - absolutely no one in that state, no relatives, no friends - and Bev came to my rescue (and has on more than one occasion.) She came to the OBX this summer for a few days and brought a little cooler with her that I suspected had some kind of southern delicacy in it for me that I crave living up here. But no! She had a new margarita recipe to try out on me and she did. (There is no one who loves a margarita more than the two of us.) I have to be honest. It was the best margarita I had ever had. And I've had a few. She told me how she makes them and I admit I am adjusting my recipe to fit hers. It kills me but when she is right, she is right. There is no one like her. She is solid in her faith; she is comfortable in her skin. She has a marriage going on ?35 years, a son whom I adore who is working toward his doctorate in physical therapy and a black lab to die for. We will have a great few days together. But sadly, you know what? I have decided in the past couple of months (maybe since Hospice?) that I am closing this chapter on my life. I have decided that due to the effects I am having, I am not going to be able to have weeklong/weekend visitors any longer. It is befitting though in a way that this chapter ends where it began, with Bev.]]> 3104 0 0 0 1005 0 0 1006 0 0 1007 0 0 1009 http://maesday.wordpress.com/ 0 0 1018 0 0 The Dirty Pink Ball http://www.sherrifillipo.com/2015/08/19/the-dirty-pink-ball/ Wed, 19 Aug 2015 14:44:19 +0000 http://www.sherrifillipo.com/?p=3110 ball

    I don't even know how or where to start with this post. Yesterday I was racing around getting ready for my visit from Bev and I had just picked up a few groceries, realized that my tank was on empty (both literally and figuratively!) and stopped to get gas. As I was standing there pumping, I noticed the above pink ball rolling down the street. This is one of the "busiest" streets in town and I watched as it rolled and dodged every car, every van. I thought I must be going crazy because as I stood there,  I suddenly felt empathy for this little ragged pink ball as it bounced down the road. Why? Why was it rolling down the road? Where did it come from? Why did I care? As my car was absolutely empty, I stood there for quite a while pumping gas and mesmerized by this dirty pink ball. I kept waiting for someone to run over it intentionally or unintentionally but it didn't happen. It skipped and skirted everyone who came by. On the sidewalk, a group of developmentally challenged adults wheeled by with their teacher and they too stared at it. I thought surely as it neared the curb, someone would pick it up but they passed by it. By now my car was full and I sat there in the stupidest predicament I believe I have ever been in. "What should I do about that ball?" It's almost like I couldn't bear to see it popped and I anthropomorphized it into some kind of little animal in need of saving. Don't tell Beloved what I did. I made a left when I should have made a right, slowed down with an SUV barreling up behind me, quickly opened up the door and scooped the ball inside the car. NOW WHAT? I surely didn't need a dirty pink ball in my life. But I had saved it. I swear to you I started writing this blog not knowing where I was headed but I am just going to finish it the way it is coming into my head: this is the way the Lord feels when we are out there weaving and dodging through life. He wants to save every last one of us whether dirty, useless, defective  - it doesn't matter. As we are bouncing down the highway, He has his eye on us ready to scoop us up if we will give Him half a chance. Anyone in need of a really used pink bouncing ball?]]>     3110 0 0 0 1011 0 0 1012 0 0 1013 http://www.riverbirchvineyards.com 0 0 1014 0 0 1015 0 0 1016 0 0 1017 0 0 1019 0 0 1020 0 0 1021 0 0 1046 0 0     Bat Girl and 90210 http://www.sherrifillipo.com/2015/08/20/bat-girl-and-90210/ Thu, 20 Aug 2015 15:29:01 +0000 http://www.sherrifillipo.com/?p=3117 A Blam Comic Book Illustration

     I must have had such a crush on Robin in the Batman series that I failed to notice that in the final season there was a Bat Girl. Her name was Yvonne Craig and she died this week of metastatic breast cancer. On chemo for quite a while, her breast cancer spread to her liver and she died two years after diagnosis.

    And though I did know of the television program 90210, I was too busy raising my son to sit down and watch a show of rich young high school students but many of you will know Shannon Doherty who yesterday announced that she too has breast cancer. The uniqueness of her case is that she was forced legally to discuss her diagnosis. She claims in court that her business manager failed to renew her health insurance once it lapsed and only later when she sought medical treatment did she receive the news that a.) she had no insurance and b.) she has invasive breast cancer with one positive lymph node. What a horrible double whammy to have to hear. [pullquote]As you can see, metastatic breast cancer can come early or it can come late. The one thing is that it will kill you at some point. Research is needed for a cure. I say end the money spent on awareness and early detection. Because they do not save lives. I am living and dying proof.[/pullquote]   Yvonne Craig: Born: 1937 Breast Cancer/Metastatic diagnosis: 2013 Died: 2015  She was 78. Shannon Doherty: Born: 1971 Breast Cancer diagnosis and spread to lymph node: 2014 Currently under treatment]]>     3117 0 0 0 1022 0 0 1023 0 0     What Disney Didn't Teach Me About Stepmothers http://www.sherrifillipo.com/2015/08/21/what-disney-didnt-teach-me-about-stepmothers/ Fri, 21 Aug 2015 13:55:05 +0000 http://www.sherrifillipo.com/?p=3128 Print

    I am taking the day off today and letting one of my lovely stepdaughters, Rebecca,  guest blog for me. Actually, this is an essay she posted on a friend's website that I asked permission to reblog here. The title above is hers and I think it is about as clever as they come.

    I grew up in a household that loved anything and everything about Disney and Disney World. I had watched all the movies and knew all the fairytales. Thus, when my father remarried and I gained a “stepmother,” my immediate reaction was to place her in the “evil stepmother” category. A few unfortunate encounters added to this thought, but in truth, I didn’t even know her.

    Click here to read the entire article: http://projectfullyhuman.com/stories/what-disney-didn-t-teach-me-about-stepmothers

    ]]>     3128 0 0 0 1025 0 0 1026 0 0 1027 0 0 1029 0 0 1030 0 0     It Really is The Circle of Life http://www.sherrifillipo.com/2015/08/24/it-really-is-the-circle-of-life/ Mon, 24 Aug 2015 16:19:20 +0000 http://www.sherrifillipo.com/?p=3135

    Do you remember me posting back in the winter the three relatives of mine who all received news of a cancer diagnosis around the same time? If not, I have added a link here The Four of Us. And within five weeks of my uncle's diagnosis, he died. My heart is heavy to tell you that my second relative, my cousin whom I had dinner with last month, died last week as well. My third relative, another uncle, is still receiving chemo. And of course then there is me. An old subject. Hearing of the  death of my cousin, was doubly painful, as Momma Jane planned a family reunion which we had on Saturday - not that my cousin or his family could have been here, but his absence was deeply felt by all of us. During lunch those of us lucky enough to secure a spot at the dining room table, toasted our cousin and the life he led. It was bittersweet as everyone adored him. He was gone but around us were twelve little cousins ages ranging from one year to about 13. They, of course did not know this much older cousin and of course being children they didn't sense the adults' intermittent sadness which is just as well. They ran and screamed and played that corn hole game, blew bubbles, waded in the creek and had one whale of a good time. I would not be truthful if I didn't acknowledge that the adults had a great time too. Three cousins came from Asheville, NC which is traveling just about the whole width of the state. We never get to see these ladies enough and it was pure joy when they arrived. Younger cousins each with three children a piece came. One of them picked me up from the airport. My dear son drove in, a cousin from the "other side" of the family joined us as she is never one to miss a great party. Mom and Dad did their usual magic. At 70+ they put on quite a feast. Burgers and hotdogs, salads and baked beans (with peaches - has anyone heard of that?). My parents have a lovely back yard with that famous creek and everyone sat outside on a blessedly cool day for NC in August. We laughed and reminisced. So poignant, especially for me. Most of us had seen each other last at my uncle's funeral. So happy to now have some happy memories to add to those sorrowful ones. We also talked about how much my uncle, who died this spring, would have loved to have been there. He, being an only child, always liked any family gathering and this is the first one we have had without him. His wife, my aunt, was a trooper on Saturday. She is still fresh in her grief and bewildered as we all would be. But I will tell you when it was her time to throw that corn sack in the hole, she marched right up there and took her turn. I am so tired of the phrase "circle of life" but honestly that is what I kept thinking Saturday. My cousin's recent death; my uncle's recent death. And then all these happy little children racing around. Me somewhere in the middle. Like my son said to me last summer, "You seem to have one foot on earth and one foot in heaven." I do. I will see you soon Richard and Gary. I will see you soon.]]>     3135 0 0 0 1031 0 0 1033 0 0 1043 0 0     An Unexpected Surprise http://www.sherrifillipo.com/2015/08/25/an-unexpected-surprise/ Tue, 25 Aug 2015 18:53:06 +0000 http://www.sherrifillipo.com/?p=3145

    When I left my job at Cone Health a lifetime ago, a very smart young woman took my place. We looked alike enough at the time that she told me people would say, "You remind me of Sherri." I don't know how she felt about the comparison but it tickled me. Her name is Jen. Fast forward to this week. She now has her doctorate in nursing and is still making a huge difference in the Operating Rooms at my former health system. A mutual friend (Bev, the friend I wrote about last week) said recently that she had never known two people more alike nor any other two people who loved the OR as much as we did. In April I drafted what I thought was a great article, if I do say so myself, ha, on social media use in the OR and the national organization was interested in publishing it. It went out to reviewers and I made the changes. It went out a second time and this time the modifications they wanted me to make I didn't agree with and I let the whole thing lie fallow. Then my uncle died and afterward, I simply didn't have the steam to complete the project. I believe it is the only thing I have ever left undone in my life and it has nagged me since then. Guess what? After spending the week with Bev last week, she urged me to let Jen read it and get her feedback. I did so and she forwarded it on to get new feedback from the national organization...drum roll please: Thanks to Dr. Jen they want to publish it with just a few updates. I'm so surprised and so happy. Jen will be my co-author and will take the brunt of the final flurry of emails and edits that invariably come with publishing. I cried when I told her that my mind couldn't handle details like it used to and that I was easily overwhelmed. She said, "Let me handle it for you." She is an angel. In the last few months I have modified my bucket list, pared it down if you will, but I am happy to say that I almost have a check in the box of something I have wanted to do since arriving in the OR in 1988 and that is have an article published in AORN. Thank you Jen (and Bev).]]>     3145 0 0 0 1035 0 0 1037 0 0 1039 0 0 1040 0 0 1041 http://maesday.wordpress.com/ 0 0 1042 0 0 1045 0 0     Where in the World are Sherri and Jim Going? http://www.sherrifillipo.com/2015/08/27/where-in-the-world-are-sherri-and-jim-going/ Thu, 27 Aug 2015 18:38:44 +0000 http://www.sherrifillipo.com/?p=3152 Watercolor world map. Colorful paint on white paper. HD quality I have spent the last two days playing post-college Momma or whoever it is that sleeps on futons - college kids and such. I won't even go into how my back hurts but I will confess that I spent the next night on the couch and rolled right off onto the carpeted floor. Oh the depths of a mother's love. Three nights...we had a great time. He worked during the days while I shopped and piddled and plumped pillows. We ate dinners together and got in as much talking as we could. The child is turning in by 8:30 or 9:00 at night (as do I so at least we are on the same page) but it doesn't leave much of a window to catch up. And I find with each visit, I just want to stare at him and soak him in so it will be enough until the next time I see him - who know when that will be. He has been employed three months now and just worked up the courage to ask about vacation policies. He was told he had to work a year before he was eligible for any days off...then much to my surprise, he told his supervisor that his mother was sick, "very sick"  as he described it and after a brief conversation, they told him they would work with him and indeed he could take time off to be with me. That was last night's conversation. And we can't decide where to go. I guess it goes without saying that this might be our last trip together. So, I tried to help narrow down options, to no avail.  The only thing he said was that he didn't want to go to somewhere I had already been. He wanted to make memories for the both of us that would be new and ours only. Oh how I love this child. So, I am asking you for a favor. Would you recommend to us some places that we could consider going - keeping in mind that mountain climbing and such is out for me though I told him I would be happy to go somewhere rugged if he was willing to walk/climb on his own during the day while I read or relaxed. I would like to hear your ideas. I know I wrote recently that I was finished with travel. I should have made the caveat that he and I have been planning to do something, just the two of us, for a long time and I so want to keep this promise. And to take a lot of pictures.]]> 3152 0 0 0 1047 0 0 1048 0 0 1049 0 0 1050 0 0 1051 0 0 1052 0 0 1053 0 0 1054 0 0 1055 0 0 1056 0 0 1057 1056 0 1058 0 0 1059 1057 0 1061 http://www.riverbirchvineyards.com 0 0 1067 http://www.JoannSamelko.com 0 0 1068 0 0 I'll See You in a Bit http://www.sherrifillipo.com/2015/08/28/ill-see-you-in-a-bit/ Fri, 28 Aug 2015 22:49:54 +0000 http://www.sherrifillipo.com/?p=3159 old stone cross

    What a day. I hate saying it again, but here I go: circle of life. Today is my birthday and it is the day of my cousin's memorial service. The one who died of a brain tumor diagnosed last Thanksgiving. The service was beautiful with slides of his life from infancy to the last week of his life. Three friends of his got up and told story after story of Gary, the storyteller.  I think I got the storyteller gene honestly. It has been raining with a lot of thunder. I have been driving Momma Jane and my aunt around all day. We are now awaiting a family dinner of pizza and Greek salad. We are getting ready to have some quiet "cousin time" as the post- service reception was full at 200 people. My cousin was nothing if not popular. We will all miss him. I had a tough time with this service. It hit too close to home. I just don't think I can go to another funeral anytime soon. At times today, I couldn't tell if I was crying for Gary or for me.  I learned something new about my cousin today. He had a favorite saying, " I'll see you in a bit." That works for me Gary. I'll see you in a bit.]]>     3159 0 0 0 1062 0 0 1064 http://www.LifefromChrist.com 0 0 1065 0 0 1066 0 0 1069 0 0 1070 0 0 1071 https://www.mylifeline.org/StephanieSugars/updates 0 0 1072 http://maesday.wordpress.com/ 0 0     Howling at the Moon http://www.sherrifillipo.com/2015/08/31/howling-at-the-moon/ Mon, 31 Aug 2015 16:30:55 +0000 http://www.sherrifillipo.com/?p=3167 Wolf howling at the moon in the midnigt I woke up in my own bed this morning. What a whirlwind in the past two weeks. The girls of August party, my friend's visit, a flight to Raleigh for the family reunion, several days with my son sleeping on that futon, then an unexpected trip to Tampa for my cousin's funeral (held on my birthday) and back to Raleigh and on to the hills of NY by 10:30 last night. Whew. The Friday night post-memorial service "cousin dinner" on the bay was really poignant and it gave me ideas for my own service. Remember when I wrote that after the 200 person post-service reception, the cousins went back to one of the local cousin's house and many of us sat on the dock and had a drink at sunset? The rain had mercifully stopped. We were all reminiscing; the neatest thing is many of us had just seen each other at Momma Jane's reunion a week ago. These are cousins we never  get to see; happily and sadly we were all back together again. That damn circle of life thing keeps happening. Last weekend we were all playing that corn hole game and laughing; last Friday we were weeping and then again laughing at the cousin's house at dinner. I am so thankful that we had cousin alone time away from everyone else. I began to think that we may have helped Gary's two siblings let off some stress and steam by being there and goofing off. Friday night, one of the younger cousins, set up his guitar and amplifier and sang some really great songs - one of my favorite Wagon Wheel he sang a second time for me and I persuaded my cousin, Gary's older brother, to get up and dance with me. A very prominent attorney in town with his name on a building for pity sake, goofed it up with me and danced. Ever the attorney and always in charge when we started dancing, he suddenly stopped and said to me, "I am leading this dance." Ha! Midway through not to be outdone, I stopped and exclaimed, "Now it's my turn." He burst out laughing. What a night. Their father, my great uncle, used to take the grandkids out to the dock at night to howl at the moon. I understand the kids loved it. And when my great uncle died a few years ago, everyone went out in the middle of the night, threw flowers into the bay and howled at the moon to honor my uncle (Gary was there that evening and led the pack). Ending the night, in the street as we were getting into the car, the clouds finally parted, the moon was visible and we let out one whale of a howl for Gary. It's the least we could do. Gary: I'll see you in a bit.]]> 3167 0 0 0 1078 0 0 1074 0 0 1075 0 0 Lessons from Flash http://www.sherrifillipo.com/2015/09/02/lessons-from-flash/ Wed, 02 Sep 2015 13:34:39 +0000 http://www.sherrifillipo.com/?p=3188 Flash and his owner/author Rachel Anne Ridge Flash and his owner, author Rachel Anne Ridge The book entitled Flash: The Homeless Donkey Who Taught Me about Life, Faith and Second Chances[/caption]   While I was out of town last week, a relative asked me what I was reading. I am always reading something. And I began to chuckle inside because I think she was waiting on something deep and reflective given my situation...I wanted to tell her I was reading Spurgeon or CS Lewis or Plato but no, I had to be honest. "I'm reading a true story about a homeless donkey." How cool and spiritual did I feel at that moment? Ha! The sweet lady that cleans my apartment often leaves me gifts from her garden or a fresh apple pie but a couple of weeks ago, she lent me a book that she wanted me to read. So during my multiple flights last week, I read it. Now in addition to wanting a hedgehog and a black lab, I want a donkey of my very own. I had no idea how smart nor how adorable they are. Don't tell Beloved. The book in all seriousness is written by a Christian woman who literally looked up one day and a donkey walked into her backyard. He must have been quite charming as he never left. She wrote about faith matters woven in with the antics of this donkey named Flash (also the name of the book) since Flash really truly doesn't rush around doing much. In the book, Flash tries to share the love of his new family with their yellow lab who definitely reigned supreme until the donkey arrived. Toward the end of the book the dog, Beau, is also looking at the end of his life and the author writes about the concept of "lasts" which I have always found fascinating and difficult. If you don't believe it, ask one of the golden girls I wrote about. She calls it my "issues with closure."
    The author Rachel Anne Ridge wrote this: I wish that Last Times would come with big signs that say, 'This is the Last Time.' Then you would know that you should savor them, no matter how inconsequential they are...You might have stopped to just feel the moment, breathe it in, and let it get fixed in your memory...[like] the last time you rocked your baby to sleep. The last time you stepped on a Lego piece in the middle of the night. The last time you tasted your grandmother's rhubarb pie. The last time you kissed your father good night.

    I was sensitive to this before meeting my donkey friend and his author but now I have taken it to a whole new height.

    ]]>     3188 0 0 0 1079 0 0 1080 0 0 1081 1080 0 1082 0 0     Two Bright Spots in an Upcoming World of (Awful) Pink http://www.sherrifillipo.com/2015/09/03/two-bright-spots-in-an-upcoming-world-of-awful-pink/ Thu, 03 Sep 2015 16:44:26 +0000 http://www.sherrifillipo.com/?p=3201
    110 Women Die Every Day From Breast Cancer - That's A Lot of Pretty Pink Ribbons.
                            110 Women Die Every Day From Breast Cancer
                                      That's A Lot of Pretty Pink Ribbons.
      As we Stage IV breast cancer patients count down to that dreaded October 1 "Breast Cancer Awareness Month" many of us are preparing to wake up to that day armed and ready to 'fight' the whole month to get our voices heard. I am a member of four closed Facebook groups dedicated to advanced breast cancer. They are closed, meaning you have to be in the fight of your life before you can join, so don't be envious of us if you do not qualify. One of the stipulations of being a member is that you don't share what you read with those outside the groups. But to suffice it to say that most, if not all of us, are dreading October 1 as we count down. There is still so much wrong and misunderstood information about there regarding breast cancer. One of the reasons I started this blog was to teach the community what were the truths about the disease. In fact breast cancer is not one disease, it is many. At any rate, I was honored when I received an email a couple of weeks ago from a pharmaceutical company who has been reading my blog and has invited me to attend a bloggers' summit - a meeting of breast cancer patients who are willing to talk to the executives of a large company about our disease - how it affects us, what we believe, etc. I truly cannot wait as I have so much I want to say not only to you but to corporations. If I am allowed, I will share with you how that weekend goes. It will occur sometime in early fall. On the heels of that email, I received another email from Gilda's Club. I couldn't figure out who or what that was. As I googled it (where would we be without google?) I found out it is a group based out of Chicago whose name it gets from the 1970's Saturday Night Live sketch comedian, Gilda Radner, who died of ovarian cancer so long ago. This group has asked me among others if I would blog about terminal breast cancer throughout the month of October and link my blogs to their national site to raise awareness not of breast cancer but of METASTATIC BREAST CANCER which is a different animal altogether as you (hopefully) know. So I am able to balance my dread (absolute dread) of breast cancer awareness month with my excitement to feel like I am going to be able to do something for those of us who wake up every morning and the first thing we think is,  "I have terminal breast cancer.  I can't believe it."]]>     3201 0 0 0 1096 https://www.facebook.com/app_scoped_user_id/921203247971120/ 0 0 1084 0 0 1085 0 0 1086 0 0 1087 0 0 1088 0 0 1089 0 0 1090 0 0 1091 1090 0 1092 http://maesday.wordpress.com/ 0 0 1093 1090 0 1098 0 0     Breast Cancer: Not Just One Disease http://www.sherrifillipo.com/2015/09/04/breast-cancer-not-just-one-disease/ Fri, 04 Sep 2015 14:25:01 +0000 http://www.sherrifillipo.com/?p=3211 A nice graphic to explain types of breast cancer thought I do not agree with the way the survival rates at the bottom of the graphic have been presented.

    breast-cancer-infographic

    ]]>     3211 0 0 0 1094 0 0     Another Look at the Chemotherapeutic Drug Kadcyla (ado-trastuzumab emtansine) http://www.sherrifillipo.com/2015/09/07/another-look-at-the-chemotherapeutic-drug-kadcyla-ado-trastuzumab-emtansine/ Mon, 07 Sep 2015 13:48:11 +0000 http://www.sherrifillipo.com/?p=3217 kadcyla logo

    I still get a lot of questions (and some funny, quizzical looks) when I tell someone who does not know, that I have stopped all chemotherapy treatment. Only today after reading that the National Institute of Health (NIH) - England is getting ready to "delist" the drug Kadcyla, did I start thinking about my time spent with Kadcyla (ado-trastuzumab emtansine). The reason NIH is doing this is due to its exorbitant annual cost of > $130,000.  I stopped due to what I considered not enough return on my investment. And by that I don't mean dollar investment, I mean the amount of life I was going to get back versus the energy, time and living through side effects I was going to "give this drug." Kadcyla is given after a patient's cancer is no longer held at bay by Herceptin (trastuzumab). That would be me. My liver was not phased by it after a while. So I went on the Kadcyla website and then read that it extended median overall survival (OS) by nearly 6 months. By nearly six months. That's all. They seem to be very proud of that... As much as I don't want to miss one minute of my son's life, or anyone's wedding or any babies being born, the median survival is only an additional six months. That's all. Not two years, not one year. And for as many as it extends life for six months, it doesn't extend it for six months for that many as well -  if you understand the definition of "median."  (But in all fairness, for some you will get more than six months.) In addition, it does not explain what that extra six months will be like  - what quality of life (or lack thereof) that extra six months will give a patient. Between the cost, the side effects and this (in my opinion) tiny return on investment, I decided in March to be done with it. If you are on Kadcyla, I say 'you go girl.' I harbor no ill will for anything people decide to do if they have the misfortune to have metastatic breast cancer. But my fear is that the average patient does NOT know the return on investment. I feel it's my duty to make many more people aware so that they can make better, informed decisions.    ]]>     3217 0 0 0 1097 0 0 1099 0 0 1109 0 0 1126 https://www.mylifeline.org/StephanieSugars/updates 0 0     On My Way to Genesee http://www.sherrifillipo.com/2015/09/08/on-my-way-to-genesee/ Tue, 08 Sep 2015 13:48:03 +0000 http://www.sherrifillipo.com/?p=3226 abbey store

    Today is the day that I join the monastery, at least for the next three days. I am currently fretting over the .6 miles that they say stands between where I am staying and the worship center. Not sure that I can walk it, not sure my wheelchair can handle the road/sidewalk - I'm even fretting over the fact that they may put that much distance between me and my coffee if that is where meals are served! Give me any situation and I can come up with a thousand ways to fret over it if given enough time. I know it doesn't sound like a woman of faith. But I am carrying Starbucks instant coffee and little sandwiches in a cooler just to be sure I don't die while I am there. Ha. People have asked me what I intend to do with my time. I have one project that I am in need of seeing to completion that has been hanging around for too long. I also intend to make a dent in the book I told you about a few weeks ago about the priest that lived there for seven months and wrote of his experiences. And lastly I am going to do some letter writing. I think I can fill up a couple of days with that, weaving some praying throughout the days as I work. Guests are also invited to join the monks as they worship. I am hoping to join them. Pray that I will have the strength of mobility if indeed everything is that .6 miles away from where I need to be. I am so looking forward to it and yet feel like I am sojourning into very unknown parts of a world in which I will only get a glimpse. But maybe a heavenly one.]]>     3226 0 0 0 1100 0 0 1101 0 0 1102 0 0 1103 0 0 1104 0 0 1105 http://maesday.wordpress.com/ 0 0 1106 0 0 1107 0 0 1108 0 0     An Unexpected U-turn http://www.sherrifillipo.com/2015/09/09/an-unexpected-u-turn/ Wed, 09 Sep 2015 16:32:30 +0000 http://www.sherrifillipo.com/?p=3233 Web

    I arrived at the abbey around 2:00 check-in time and noticed that the temperature was a staggering 93 degrees. For me, that feels like 103. I was given a quick tour of the facility where I would be staying and encouraged not to walk the .6 miles to the worship center but to drive. For me, that went without saying! The sleeping space was a rambling two-story house. I noted on the board there were about ten people staying in the home. I also noted though we were not supposed to talk, there was a lot of general house noises of large men walking up and down stairs, chairs scraping the floors and so on. Things that in my apartment, I don't have! I thought almost immediately, "This place is noisier than my home!" At 4:30pm I drove to the worship center and opened an enormously heavy wooden door and was met with the smell of freshly baked bread. These monks, many years ago, began baking bread for themselves and it became so popular with visitors that it is now the business that sustains their ministry. I was tempted to take a loaf of bread into the sanctuary and nibble on it during the service but thought better of it. I had arrived early enough that there were no lights on - the only light reflected through the modern, yet lovely stained glass windows at the front of the sanctuary. About ten minutes later, the monks began to come in - funny to watch - in total random order, climbing over one another, a minor spat (do monks spat?) where an elderly monk had placed himself and then after someone whispered to him, he reluctantly moved. I would have loved to have known what that was all about. Then they began singing. Last night's chants were Psalms 131 and 132. I wasn't surprised but saddened as I looked that them. Two rows of monks facing two rows of monks. Though there are 32 in this order, I counted 23, over half would be considered elderly. A half dozen very elderly, a couple of canes, one arm in a cast. As I listened, I wondered about the future of this monastery. I am not Catholic and maybe I would know some of these things if I were. I did notice several men in their early 40's with beautiful voices that made me happy that there was some youth within this group. The service was short; part of me sad, part of me happy as the sanctuary didn't seem to be air conditioned and I was worn out from the drive to Genesee and the heat getting from the sleeping quarters to the sanctuary. I wanted to return after supper for the evening compline but knew in my heart I was not going to be able to get back out in the heat. Dinner was served at 5:15pm sharp with a bell that was rung up and down the center hallway. Cold salads, one exceptionally delicious corn salad with fresh basil and lime juice. We sat facing each other akin to the monks and ate together in silence. There was a little music to cut the silence. Afterward, I went back to my room and began reading  The Genesee Diary, the chronicling of the Dutch priest who received permission to live with the monks for seven months back in the '70s. At 6:30pm when I had hoped to perhaps go back and hear the evening service I got a sudden deep feeling that I needed to go home - meaning back to Corning. I tried to push it aside; I tried to flesh out why I felt it so suddenly, so deeply. I can't describe it to you - can't explain it fully. The only thing I have come up with was a need to get back to my apartment, my bed, my silence where I am most comfortable and feel most safe. Is it that hospice thing again about wanting to be alone and drawing into yourself? I am not one to make a snap decision but I felt a powerful urge to leave, right then. I wrote a note to the woman who directs the visitor program (oddly there is no abbey employee who stays overnight in the house, which also felt strange) so when she arrived the next day, she wouldn't wonder or worry. And I left last night. I drove and thought, "What have I gone and done? What was that all about?" I got no answer from God. I did arrive home safely, took a long shower and slept deeply. Beloved is at a speaking engagement so I am having my own silence/solitude day as they call it. It dawned on me that unless I verbally talk to the cats, everyday is a silence/solitude day. So I am plowing through the book. It is fascinating to link things I saw with what Nouwen writes. But why I needed to come back early from something that I was deeply looking forward to remains a mystery to me today.]]>     3233 0 0 0 1116 0 0 1117 http://maesday.wordpress.com/ 0 0 1112 0 0 1113 0 0 1114 0 0 1115 1114 1     Glamour Magazine: What Breast Cancer Really Looks Like http://www.sherrifillipo.com/2015/09/10/glamour-magazine-what-breast-cancer-really-looks-like/ Thu, 10 Sep 2015 11:38:13 +0000 http://www.sherrifillipo.com/?p=3238 here. Recently Glamour magazine wrote an article about women who have Stage IV, terminal cancer which thrilled a huge community of us who are tired of the fall editions of magazines whitewashing the breast cancer topic with awareness topics and early detection pieces. Beth is the woman, top left. I love that she has taken this massive pink industry and has helped turn it on its ear. metavivor

    Beth Fairchild Interview

       ]]>     3238 0 0 0 1119 0 0 1120 0 0 1122 0 0     http://www.sherrifillipo.com/2015/09/09/3245/ Wed, 09 Sep 2015 20:12:43 +0000 http://www.sherrifillipo.com/?p=3245 Paris]]> 3245 0 0 0 Taking a Deep Dive With Breast Cancer Bloggers http://www.sherrifillipo.com/2015/09/11/taking-a-deep-dive-with-breast-cancer-bloggers/ Fri, 11 Sep 2015 13:59:05 +0000 http://www.sherrifillipo.com/?p=3248 professional female swimmer after jumping with air bubbles trail in blue water Yesterday, I had an interesting conversation with members of a company who are hosting a bloggers' summit. They are gathering about a dozen bloggers together to  to pick our brains about breast cancer, side effects to medications, the ability or inability to discuss issues with their care providers and so on. The bloggers will represent breast disease at all stages - not everyone will be Stage IV. This branding/communications company will then take back their findings to one of the leading pharmaceutical companies. I am looking forward to it on so many levels - to differentiate myself (us) from those who are not, at this point, in the battle of their lives, to show these non-clinical creative people what it is like to live with a disease that is slowly taking my (our) life from me (us). I am so appreciative that they chose one of us, a no nonsense, no pink ribbon patient to speak her mind. The summit will be held in Manhattan during the month of  October, befitting right? Is there anything you would like to share with me that I might be able to use during this time? I'd like to think I am going as your Stage IV ambassador and am so thankful to have this platform on which to speak. I will keep you posted!]]> 3248 0 0 0 1125 0 0 1128 0 0 1129 0 0 1130 0 0 1131 0 0 1132 0 0 1133 http://maesday.wordpress.com/ 0 0 1135 0 0 All My Days Were Ordained For Me http://www.sherrifillipo.com/2015/09/22/all-my-days-were-ordained-for-me/ Tue, 22 Sep 2015 13:57:33 +0000 http://www.sherrifillipo.com/?p=3254 Abstract retro background with colorful rainbow numbers It's funny how some crisp days like we are having now can either catapult me into a heavenly realm or they can weigh me down with sadness at what I and my family are bearing. Luckily the low days are few. Living up on the third floor of my apartment, I get a close hand look at branches swaying and birds trying to hang on with their little skinny bird legs and it is easy to be swept away with thoughts. Some days I feel like that little bird holding on with all my might. As the days start to get shorter and falls settles in pretty quickly, I begin to think again about the oddly mystical date I have with the calendar seemingly every Thanksgiving. Really every other. For those who don't know, I started chemo Thanksgiving/Christmas 2010, again at the same time in 2012 and a third time in 2014. So though I am off a year, I still feel like ducking like a animal does when it has been scolded too many times just in case the hand of discipline is going to be lowered again. But the devotion I had a couple of days has continued to resonate with me. It is a common verse but one that is fragrant to me:

    Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.  Psalm 139:16

    All, not some or most, God has known about since before I existed. My life, my numbered days, aren't a secret to Him. He won't look up in heaven one day and say wide-eyed, "I didn't know you were coming today. My how time has gotten away from me."  I try to cling to this as I sit with Beloved or get a text from my son.

    On Monday, my son texted me and asked simply to send him some message that would uplift him. I think he is having his own struggles being an adult living in a  world now where Mondays come far too often. I texted back that our time on earth is like a grain of sand compared to the amount of time we will spend with those who believe when we are in heaven. I was happily surprised when in about an hour later, he texted back, "Thanks. That helped a lot."  I should listen to my own advice.

    ]]>     3254 0 0 0 1186 0 0 1187 1186 1 1188 0 0 1189 1188 1 1190 0 0     Updated Link to Glamour Magazine Article and Beth Fairchild Interview http://www.sherrifillipo.com/2015/09/10/updated-link-to-glamour-magazine-article-and-beth-fairchild-interview/ Thu, 10 Sep 2015 19:49:54 +0000 http://www.sherrifillipo.com/?p=3256 Beth Fairchild (by the way she is from North Carolina!)]]> 3256 0 0 0 1123 0 0 Astroturf and Breast Cancer: It's Not What You Think http://www.sherrifillipo.com/2015/09/14/astroturf-and-breast-cancer-its-not-what-you-think/ Mon, 14 Sep 2015 13:27:25 +0000 http://www.sherrifillipo.com/?p=3261 Colorful tablets with capsules I had a long talk over the weekend with a very wise person. I was re-introduced to a phrase that he claims I knew but I will tell you chemo must have completely erased any and all memory of it. As a nurse and administrator for over 25 years prior to my cancer diagnosis, I had gone up against a lot of influential people in my career and by that I don't just mean surgeons. For a couple of years I worked as a nurse in the department of contracts, purchasing and capital investments. The hospital decided to follow a country wide movement of placing a clinical individual in departments and on committees where clinical purchasing decisions were being made - at the table to counterbalance a surgeon's or sales rep's view/opinion of a product. I sat on 13 value analysis committees, committees deciding on the purchase of various products from sutures to lasers. I was often the David to the company's Goliath. Many times sales reps would come to my office or to committee with 'research' supporting their product or debunking a competitor's product. Often all you had to do was look at the bibliography (if there was one) or at the tiniest print you could find on the document and you would discover that the rep's company had funded the 'research.' It used to rankle me beyond words. When it was time to launch, at the time, a new process  called vendor credentialing, I was placed in charge of coordinating  it for our very large organization. The gist of such a program was that vendors had to have actual appointment times with specific people (no more roaming the hospital and snagging physicians to "talk.") Vendors would have to sign in and  sign out when they visited. They could no longer 'cold call.' Can I just say, my name was mud as soon as the vendors and their companies got word of what we were doing? Well, it was worse than mud but I try to keep a clean blog!  It took months of preparatory work before the launch of the program and once during that time, I was standing at an elevator alongside two well dressed men and overheard one of them say, " I'd like to find out who this Sherri person is. I really would." And I can tell you from his face, it wasn't so he could send me a pick-me-up-bouquet. Sales reps' salaries and promotions depended on an all access to hospitals, employees and physicians all the time. By corralling them, we were doing our best to put us, the hospital, back in control, rather than in the hands of  the reps.  Which led me and this wise person to the term "astroturfing." Astroturfing  is used in healthcare and in politics - anywhere big business needs to make its mark and keep it there. The  Guardian defines astroturfing  [as] "the attempt to create an impression of widespread grassroots support for a policy, individual, or product, where little such support exists. Multiple online identities and fake pressure groups are used to mislead the public into believing that the position of the astroturfer is the commonly held view." closeup of grass on a white background

    By curtailing the activities of the vendors, whether they were selling pharmaceuticals, surgical instruments, suction canisters or suture was to meet them on our terms, review literature on the product from them and compare it to our own literature searches and to put time and distance between the hospital and the vendor so that we could make slower, better informed decisions. And perhaps we would be able to sniff out those times when we were being bamboozled or I guess you could say "astroturfed."

    So, as you know, I am no longer working but blogging and sometimes my blog topics swing far and wide. Which leads me to the Kadcyla topic of last week. A lot of my metastatic breast cancer friends on closed Facebook sites were surprised I had such strong words about treatment modalities. It was less about the one drug and more about my never ending passion for educating people who have not spent their lives inside hospitals and may swallow (no pun intended) everything they see on the nightly news during  the advertisements as absolute fact; who will try any drug their oncologist will suggest in hopes that this one will be the one that gives them the longest time with their friend NED (no evidence of disease); that if their MD says do it, they do it without believing they have a choice to say no or to say, I have had enough; that everyone is out there with the goal to do their best, after all who doesn't want to cheerlead for and support women who are dying of breast cancer? My point is that there are many out there -  individuals and corporations -  who are not altruistic; many who sadly, but truthfully, want a healthy financial bottom line at any and all cost. Think about the physician who recently was given a stiff prison  sentence after he had been treating hundreds of people for cancer which none of them had. So, I do tend to read websites with that skepticism like I did when I was a clinical contract administrator. I listen to the pharmaceutical advertisements closely especially when they say, "Ask your doctor...." I take the percentages that companies use as their vehicle for showing survival rates or improvements and convert them into months which when you are dying is more beneficial to know. It's just my nature.]]>     3261 0 0 0 1137 0 0 1138 0 0 1139 0 0 1140 https://www.mylifeline.org/StephanieSugars/updates 0 0 1141 1138 1 1142 1139 1 1143 1140 1 1144 0 0 1146 1144 1 1147 1137 1     All Dressed Up With Somewhere to Go (in a wheelchair) http://www.sherrifillipo.com/2015/09/16/all-dressed-up-with-somewhere-to-go-in-a-wheelchair/ Wed, 16 Sep 2015 12:45:56 +0000 http://www.sherrifillipo.com/?p=3276 Party Glasses

    I went to an annual hospital gala Saturday night, a rarity to get all glammed up here in rural New York. I would guess several hundred people attended from the community. As I slowly got dressed, trying to find something that would fit, I began to fret about dress shoes and my declining gait. The one thing I did not want to do (besides bust right out of my dress) was to fall because I was wearing heels which I am no longer accustomed to wearing. After much fussing and primping, I was ready to go. And Beloved turned to me and said, "I don't think you can do it tonight without your wheelchair." I got a knot in the pit of my stomach. He reminded me that the party would be in the hospital with food and drinks on five floors. He was right. But I didn't like the thought of being all dressed up and sitting down. Well, we had a nice long rainy 45 minute dive to ruminate over it. Could I just use my cane that has a little seat attached? Could I try to maneuver through and then go back and get the wheelchair if I needed it? And on and on I went. Beloved drove in silence. He knows sometimes I just have to turn something inside out and upside down before I finally get back to where he's been all along. We pulled up and parked; I pulled out my NY handicap parking sign which I now do with a  flourish. He looked at me and I at him. "Would you get the wheelchair out of the trunk for me?" I hate when he is right. It was odd being three feet high and all dolled up. People would see Beloved, a fairly tall man, and not see his munchkin wife until many seconds later. People know of our situation but no one had ever seen me in a wheelchair. Everyone was kind as one would expect. Everyone bent down and made a fuss over me (which I like but I like to be standing fully upright in my 5'7" frame when I am fussed over. That night I felt like a kid sitting down.) I noticed lots of things being said that I couldn't hear nor keep up with especially when Beloved would talk. Since he was behind me, I was forever looking back and up to him and asking him to repeat what he had just said. The man is patient with me. He wheeled me around with a drink in his hand all night. Just as if we have always gone out the three of us: he, me and the little wheelchair. A cute threesome that I am going to have to get used to. It reminded me of having a baby and the sudden realization that this baby was going to be going everywhere I was going -  every time! Yike! The same thing with this wheelchair; I am going to have to get used to it as it is not going away.    ]]>     3276 0 0 0 1154 0 0 1155 http://www.riverbirchvineyards.com 0 0 1156 0 0 1157 0 0 1158 0 0 1159 0 0 1160 http://cancerqueen.me 0 0     It's Not Pinktober Yet and I Already Have a Headache http://www.sherrifillipo.com/2015/09/15/its-not-pinktober-yet-and-i-already-have-a-headache/ Tue, 15 Sep 2015 12:52:48 +0000 http://www.sherrifillipo.com/?p=3278 statue with headaches with red brick background

    I realize it is not yet "Pinktober" as we call it but when  journals and magazines get a head start, then we Stage IV, terminal patients have to start the race early too. Below is an article from the Journal of Good Housekeeping. A woman was interviewed about having breast cancer and the sentence that has set social media on fire is this woman's physician's comment that Stage IV though not curable, is chronic, like diabetes!  And then patient's closing words in the article "My cancer is treatable, not terminal. I've learned to live with it." Please note below that her cancer has spread to her liver and to her bones. If you have learned nothing through this blog, I hope you know that when the cancer goes to a distant site (e.g. brain, lung, bone, liver) it is terminal.

    Oh my word. My first thought was, I needed to phone my former oncologist in Arizona and tell her that she had it all wrong!  I am not terminally ill, I am CHRONICALLY ill. Oh, my pinktober headache has already started and it isn't even October yet!

    The Words That Stung

    Learning she had metastatic disease — breast cancer that had spread to her lymph nodes, liver, and bones and was considered incurable — didn't upset Lynda as much as what her doctor said next. "Hearing I couldn't ever have kids," remembers the 33-year-old, "was the most gut-wrenching part."

    Lynda and her husband, Brian, both high school teachers, had been trying to conceive for months when Lynda found a lump in her left breast. "I kept thinking, What did I do wrong?" she says. But Maria Theodoulou, M.D., her oncologist at Memorial Sloan Kettering Cancer Center in New York City, where Lynda had her initial treatment, told her to stop blaming herself, and Lynda eventually listened: "My doctor said, 'It has to do with genes and environment. And although it's not curable, it's a chronic disease that's treatable, like diabetes.'"
      Read more if you can bear it: Facing Cancer With a Plan for the Future]]>     3278 0 0 0 1150 0 0 1151 0 0 1152 0 0 1153 0 0 1165 0 0     Updated Bucket List 2015-2016 http://www.sherrifillipo.com/2015/09/17/updated-bucket-list-2015-2016/ Thu, 17 Sep 2015 13:55:06 +0000 http://www.sherrifillipo.com/?p=3294 Blue double buckets

    When I started blogging a whole year ago, I made of list of things that I had already checked off my bucket list and I listed things I still wanted to do. I followed up that list the next day with some outrageous things that to date haven't occurred. (I am still hoping Steve Martin picks up the phone and asks me to go to dinner. He can bring his wife, no problem.) But as a whole year has passed by, my body continues to struggle against the cancer inside and I am finding that my list needs to be modified so in the interest of listening to both Beloved and my body, my updated bucket list for this coming year is as follows:
    • I still want to go to the Culinary Institute of America in Hyde Park, NY and eat at least one meal prepared by the students. That to me is doable.
    • I want to go tubing down a hill/mountain and I think that is possible. Not sure if it is wise to continue to want to skate on a pond but  I would like to go to my friend, Deb's house who lives on a pond/lake and watch others do it.
    • I'll live if I don't get to Frank Lloyd Wright's Falling Water Home but I want to  suggest  a book I read several years ago that I think you would enjoy. It is historical fiction (not typically my genre) and its title is Loving Frank.
    • I want to see the Eagles in concert. Yes, I know it would be the fourth time. Yes, I know we paid a king's ransom last time I got Beloved to click on a buy button after plying him with a really strong margarita but you can never hear Hotel California sung too many times. (Lucky for Beloved that I just read that they aren't touring for another year and a half. I don't think he will have to worry about this bucket list item. Jus sayn'.)
    Some bucket list items about to come true :
    • The Six Sigma gods have shown favor on me. My former professor  and avid reader of this blog told me she thought that added to the work I had already done toward my black belt certification many years ago, plus the amount of research and education this blog has put forth, her words paraphrased,  she was officially  certifying me as a black belt. For those of you who have been reading all along, this WAS on my original bucket list. I am so excited. Thank you Lynne! (The toughest teacher I ever had not including Madame Hemphill!)
    • Thanks to a friend and former colleague, we are publishing an article in AORN - the bible of the Operating Room - the Association of periOperative Registered Nurses! A 25 year long desire. Woohoo!! Thank you Jenn and Beverly!
    I will repeat myself like I did last year: you never know how much time you have left. What are those quirky or not so quirky things that you really want to do but keep putting off? Don't put them off. Trust me on this one.]]>     3294 0 0 0 1161 0 0 1162 0 0 1163 1161 1 1164 1162 1 1166 0 0 1191 0 0     Jim and Sherri Have Found Their Spot http://www.sherrifillipo.com/2015/09/18/jim-and-sherri-have-found-their-spot/ Fri, 18 Sep 2015 14:31:32 +0000 http://www.sherrifillipo.com/?p=3313
    view from our cabin's deck
                                                                           VIEW FROM THE DECK
    Thank you to everyone who gave me wonderful and wild suggestions for places to travel with my son. I spent a lot of time on the internet doing miles and miles of virtual traveling. I mean I even spent a while on a website to  cruise to the Antarctica. Yes, I know, sometimes my meds make my mind do funny things. I can't even walk to the grocery store but somehow I could see myself up there on the bow of the ship helping the captain break through the ice. Oh well... Beloved and I have had several discussions as he has witnessed me limp through airports this summer and cancel two trips to celebrate my birthday. If I am the helium balloon that floats higher and higher, he is that little pouch of rocks that the balloon is tied to so it just doesn't float away into space. Oh, he is not offended by that analogy. He is perfectly happy being the voice of reason inside  that little pouch of rocks. So, tiny drum roll please as we are not going anywhere at ALL where I thought we would go. In fact I got so irritable with options and limitations that one morning last week, I just said to myself, "Forget it." And I thought I would think about it in a week or two. And then I was having a morning devotional, NOT praying or thinking about the trip in the slightest when I 'felt' or 'heard' that we should go to the mountains of NC for our trip. I couldn't believe it at first as much as I do love the mountains, the thought sounded as exciting as spending three days in my backyard (if I had one). But as soon as I thought, "Aw....no..." it felt right. Really right. But I wasn't sure how my son would react; after all, it is HIS trip and he had some pretty grand ideas about where to go. I texted him at work and within five minutes, he responded with "that sounds great - let's do it." It was then that I knew it was heaven sent. I mean, it's only a couple of hours away from his home - not half way around the world like I would have hoped for him. But I found a great house that we could get lost in - we didn't need the space but the view appears to be magnificent and the kitchen has an industrial looking Wolf range which will thrill my chef-son. So, it's decided. In a few weeks, I am going to fly to his hometown, we will buy groceries and hit the road for three days. I haven't had that much time alone with him in years. As you know, I am keeping a journal for him and intend to take it to document the trip. He is aware of the journal and knows its cover and is ready to read it at some point in the future.]]>     3313 0 0 0 1167 0 0 1168 0 0 1169 0 0 1170 0 0 1171 0 0 1173 0 0 1174 0 0 1178 0 0 1179 http://www.riverbirchvineyards.com 0 0     Jackie Collins, Best-Selling Author, Dies of Metastatic Breast Cancer http://www.sherrifillipo.com/2015/09/21/jackie-collins-best-selling-author-dies-of-metastatic-breast-cancer/ Mon, 21 Sep 2015 16:28:50 +0000 http://www.sherrifillipo.com/?p=3321 photo: abcnews.com photo: abcnews.com[/caption]   Jackie Collins, best selling author, died on Saturday of metastatic breast cancer. In several articles, she said she preferred to keep the news of her breast cancer private but she stated that throughout the years she had had a lumpectomy, radiation and "other various treatments." She was diagnosed 6 1/2 years ago.  It was asked that in lieu of flowers that a  donation be sent  to the Susan G. Komen Breast Cancer Organization. While I in no way intend to desecrate her memory, I want to use yet another metastatic breast cancer death to highlight that the Susan Komen organization provides an infinitesimal amount of its millions annually to find a cure for terminal cancer. Their aim and focus is early detection. I simply don't think people realize it yet. Give your money where you want to give you money. But I implore everyone to at least know the facts before they do:
    • Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms.
    • 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.
       ]]>     3321 0 0 0 1180 0 0 1181 http://mstakesme.wordpress.com 0 0 1182 1181 0 1183 0 0 1185 0 0 1261 0 0     A Picture That's Worth A Thousand Pink Words http://www.sherrifillipo.com/2015/09/24/a-picture-thats-worth-a-thousand-pink-words/ Thu, 24 Sep 2015 14:07:42 +0000 http://www.sherrifillipo.com/?p=3345 mast

         ]]>     3345 0 0 0 1194 0 0 1195 0 0 1196 0 0 1197 https://www.mylifeline.org/StephanieSugars/updates 0 0 1198 http://None 0 0 1206 0 0     Yom Kippur and Forgiveness http://www.sherrifillipo.com/2015/09/23/yom-kippur-and-forgiveness/ Wed, 23 Sep 2015 19:23:16 +0000 http://www.sherrifillipo.com/?p=3351 Der Judenstern aus dem Metall auf dem Hintergrund des weißen Steines. Das Fragment des Grabsteins auf dem jüdischen Friedhof in Deutschland. Today, as most people know, is Yom Kippur, the highest holy day in the Jewish faith. It is the day of atonement, the asking of the forgiveness of sins. I understand even the most secular Jewish person honors this day; many spend 25 hours fasting and attending multiple services. As this metastatic disease continues to push me on many fronts, over the last year, I have been trying to put things into place from the seemingly mundane to the most important. Last fall, I spent days cleaning out my bathroom drawers. Several months ago, I finally gave away suit jackets that I no longer have use for. In the past few weeks, I have been ruminating over relationships that have suffered at my hand or through a friend's hand and the need to make things right. I wouldn't even say that these are all  serious, egregious acts but somehow along the way feelings have gotten hurt and there is faction. Living so far away from so many that I grew up with, it is easy to forget about some of the situations or even some of the people as so many and so much has been replaced. But there are still a handful of people and situations that I need to come face-to-face with and I just haven't. To clarify, Yom Kippur is a day of atonement between man and God, not between man and man. The Jewish belief, a solid one, is the understanding that if you have done something to someone, you go to that person first and then to God. This is sound biblical advice. I just continue to wait to figure out how to do it. Let's be real: I am procrastinating. I don't want to do it. I don't want to dredge up old wounds and I don't want pity from someone because, "bless her heart she has breast cancer so I need to make it right" when it might not be. Pray that in the next few weeks I will be able to hit this head on, like I usually do most other things. It will be tough. But it must be done.]]> 3351 0 0 0 1192 0 0 1193 0 0 Jackie Collins' Ironic Statement http://www.sherrifillipo.com/2015/09/25/jackie-collins-ironic-statement/ Fri, 25 Sep 2015 18:57:32 +0000 http://www.sherrifillipo.com/?p=3358 jackie people (2)

    ]]>     3358 0 0 0 1199 0 0     A Tribute to Shirley and Jim http://www.sherrifillipo.com/2015/09/28/a-tribute-to-shirley-and-jim/ Mon, 28 Sep 2015 16:35:49 +0000 http://www.sherrifillipo.com/?p=3362 shirley magana

    I am way overdue in this post. But lunch yesterday with our dear friends who are on their way to Ann Arbor, Michigan to begin a new life made the reality of their leaving something I could no longer avoid. Thanks to my emotional state, I cried at lunch as much as I have cried at any funeral. But I need to back up and tell you about this extraordinary couple. They met 30 years ago in San Francisco by chance. I have heard them tell this story several times and I could listen to it many times more. He was with business partners, she was with girlfriends - they met over the weekend and were holding hands and were a couple by the time she flew back east. They have not be apart since. The love this couple has is palpable.  They are the true definition of soulmates. I have never in my three years of knowing them ever heard a cross word between them. Shoot, I am starting to cry as I type. He is a gourmand and wine connoisseur but not in that pompous way - just in the fun way and he has taught me so much about grapes and what it takes to be a vintner.  There is no better conversationalist and some of my most favorite moments in my life have been surrounded by these folks. She is a nurse and was the Corning Hospital president when I met her. Beloved was being interviewed for his position at another facility. Mine was a lunch meeting with her.  I walked into her office conference room and noticed a nice lunch setup, hoping while I talked, I wouldn't have a piece of lettuce dangling off my tooth. We had gotten about five minutes into our interview when I knew I had met a life long friend. And I knew I had to live in Corning. When I mentioned to her how fascinated I was with the loft apartments in Corning, the next thing I knew we were flying down Market Street to see her lovely renovated space all to the surprise of her husband, though he knew we were on our way, we arrived a little too early. Semi-retired, he was in his very handsome pajamas vacuuming the floor! I fell in love immediately.jim magana We obviously ended up accepting the jobs in this area and Shirley went to work (in only the way that Shirley can) and had us temporary housing above the Tommy Hilfiger store in a matter of days. She is small and reminds me of a sprite - always working, a twinkle in her eye. She knows everyone and everyone knows her. When Beloved and I finally arrived and moved in, we began to see them socially. Going often to our spot "Tony's" which would remind you of where Sinatra would have hung out. The young kids in town don't venture in often, they say it's too expensive but I know where they go and the prices are the same. It just has an ambiance that is old world. Shirley and Jim were avid golfers and I had decided I wanted to pick the sport back up. I had begun to play just a little back in the south. Beloved loves the game, so the first summer we were together, the four of us played the weekends away and would spend afternoons in the clubhouse drinking mostly whatever Jim thought we should! He was never wrong. Sadly, tragedy hit both of our families within weeks of each the first fall we were here. Jim ended up having a stroke that has left him wheelchair bound and you know my story, a few weeks after the stroke, I was diagnosed with metastatic breast cancer. Our golfing days were over as quickly as they had started. We all spent the winter of 2012 redefining who we were as couples, as people and learning to live with new diseases. Luckily, Tony's still served wine and we have ended up meeting there for many, many evenings of cocktails and hamburger sliders. As all good things come to an end (and I still don't know why that has to be) Shirley announced her retirement earlier this year and they, as a couple, have decided to move to Michigan where they have family. I have known this for a while but I guess my heart and soul would not allow it to penetrate. I could go on for pages telling you the number of ways they have single-handedly integrated us into a community where we knew no one  - the people they have introduced us to, the parties we have been invited to, all due to Jim and Shirley wrapping their arms around us literally and figuratively. So yesterday.....the day was beautiful. We sat outside at the clubhouse and watched others play golf while we ate and drank, reminiscing. This golf course in a way is where we started and now where we have ended. Oh, I know we will see each other again. But our lives, our four lives living in Corning is over. Like my favorite verse says, our lives are like a mist  - here for a moment and then vanishes. Godspeed my beloved friends. Godspeed.]]>     3362 0 0 0 1221 0 0 1204 0 0 1205 0 0 1207 0 0 1208 0 0 1209 0 0 1210 1209 1 1211 1204 1 1212 1208 1 1213 1205 1 1214 0 0     Lovely Serendepity http://www.sherrifillipo.com/2015/09/29/lovely-serendepity/ Tue, 29 Sep 2015 13:29:54 +0000 http://www.sherrifillipo.com/?p=3371 boat

    I have an odd habit of every now and then choosing a book to read by its cover and/or its title - I know exactly what the saying tells you NOT to do. Well, I was messing around in the Kindle world just to see what was out there and saw the book Dying to go on Vacation. I know my humor can often turn macabre and I just knew this was going to be some book about death and chose it on the spot. This is when I think God gets funny. It ends up being about a man who has been diagnosed with a rare form of cancer living in North Carolina - my home state. But to top it off, the vacation ends up being at the OBX! What? The gist of the plot line (of this true story) is the husband gets sick while out of town trying to take a vacation with his wife. He is in the ministry and they haven't taken time off for themselves in many years. He becomes quite sick and eventually checks himself in to the local hospital where he spends many days and upon exit has been given a diagnosis of cancer with a prognosis of several months to live. This is really not what I want to concentrate on but rather what happens when they return home to NC. A couple of weeks after their worst nightmare, he exclaims that that wasn't a vacation at all - if anything it was the sheer opposite. And he got the idea of using social media to see if anyone he knew would let him and his wife use a vacation home for a couple of days to decompress from what had happened. I suppose that took a lot of humility as they, being in the ministry, could not afford another trip, nor anything much knowing what was laying ahead of them. So after he posted his plea/request, within an hour a realty company called them and said a friend of a friend of a friend had a vacation home on the OBX that they would be happy to let them stay - for a week, basically oceanfront! He said it was deeply humbling - that he and his wife were used to giving, not receiving but this family, whom they did not know, was giving. I love this. I truly do. When Beloved and I take the turn up Highway 12 which is a little slip of a beach road that takes us up the OBX to where our house is, we often exclaim how dark the houses are, we often mention all of that real estate just sitting idle. Of course not in the summer but now when we go, the houses stand like sentinels. I think we all have things, places, skills in our lives that we can give to help people in need and I don't mean just folks who are blessed enough to have a beach house. I have always loved when a need is presented that looks as if there is no answer and God places the answer right before them. I remember when I was in graduate school and we had a mandatory internship that, based on our initiative, could be anywhere we wanted to go. I had chosen New Mexico but had no idea how my husband and I would afford to be there for six months. So as I was standing in the shower one evening, I was praying. Sometimes I pray best under running water - I don't get it. And I got the clearest message to contact "the churches." I got out and wrote letters to about a dozen churches in Santa Fe explaining that I had six months to spend in an internship and that we needed a place to stay....about a week later, a gruff former colonel asked to speak to me and he told me he and his wife were headed to warmer weather for the winter and would I be willing to housesit and dog sit for them? Holy cow yes! And we did. It was a marvelous house and a dog, Cheyenne, I will never forget. They paid all utilities. We were free birds. What a blessing. My prayer would be that we could all look around and see what service we might be able to render to someone who hasn't a clue where the help is coming from.]]>     3371 0 0 0 1216 0 0 1217 0 0 1218 0 0 1219 0 0 1220 0 0 1222 0 0 1215 0 0     Dying to go on Vacation: A Journey of Discovering Life While Facing Death Part II http://www.sherrifillipo.com/2015/09/30/dying-to-go-on-vacation-a-journey-of-discovering-life-while-facing-death-part-ii/ Wed, 30 Sep 2015 14:52:51 +0000 http://www.sherrifillipo.com/?p=3380          Marty J. Cauley              www.martycauley.org[/caption] I wanted today to be a Part II of yesterday's blog, the one about the man who finds out on vacation that he has cancer and a prognosis of a few months to live. He  is then given a home to use as true vacation spot on the coast of NC and his family actually gets to redo the first vacation that didn't go as planned. There were several quotes throughout the book that hit spot on with me as a fellow cancer patient and I wanted to share them here. I don't know if they will all resonate with you but I am betting at least one will:
    • [The diagnosis] hangs on her soul like a weight that I would give anything to lift. For twenty-eight days, the love of my life has shouldered this burden that I cannot carry for her.
     
    • The distance between the suspected diagnosis and the actual results had given us the gift of time to begin processing what it means to watch decades of your life evaporate before your very eyes.
     
    • How many times in our lives do we stand at the threshold of making a difference? We evaluate the options and decide whether we want to get involved or just turn a blind eye and head home. Daily, it seems, we face numerous chances to make somebody's life a little easier, even if it means ours may be a little more difficult. One of the commitments I am making is to be the stranger who serves. To seek out chances to make a difference. Will you?
     
    • Time is precious. We talk about living every day to the fullest, but usually live most days like we have an endless supply. Mortality is an interesting thing. We all give intellectual acquiescence to the idea of our mortality, but we live as though we are really immortal. I understand why. If we are not careful, we allow the urgent to overwhelm the important when we assume that we can always make up for today by borrowing on our tomorrows. We leverage the future by sacrificing the joy of the present.
     
    • I have come up with an answer for those who ask me what they can do for me. I tell them: love deeply, live passionately; listen intentionally to God, then do what He says. If you do that, when the day comes that you find yourself looking into the mirror of your own mortality, you will be happy with what you find.
    ]]>     3380 0 0 0 1223 0 0 1224 0 0 1225 0 0 1226 1225 1 1227 0 0 1229 0 0     October 2 http://www.sherrifillipo.com/2015/10/02/october-2/ Fri, 02 Oct 2015 13:52:31 +0000 http://www.sherrifillipo.com/?p=3393

    No one dies from breast cancer that remains in the breast. Is this a new concept for you?  For millions of people, they have difficulty grasping this idea. Breast cancer becomes terminal when cancerous cells travel to a vital organ and that is what threatens life. If your cancer moves out of your breast(s) and travels to an organ, lung, liver, brain, bone - then you will die of breast cancer. It's called metastatic or Stage IV.

     

    ]]>     3393 0 0 0 1234 0 0 1235 0 0     October 3 http://www.sherrifillipo.com/2015/10/03/october-3/ Sat, 03 Oct 2015 14:46:20 +0000 http://www.sherrifillipo.com/?p=3403 mammogram

    Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms. I never missed a mammogram. My cancer in both breasts was considered detected early. Within 22 months of my original diagnosis, I was given a terminal diagnosis.

    This is what Susan G. Komen doesn't communicate.

    ]]>     3403 0 0 0 1237 0 0 1238 0 0 1250 0 0     October 4 http://www.sherrifillipo.com/2015/10/04/october-4/ Sun, 04 Oct 2015 10:01:25 +0000 http://www.sherrifillipo.com/?p=3407 image

    20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

    I am that 20-30%. I was diagnosed early.

     And again, this what Susan G. Komen does not communicate.

     ]]>     3407 0 0 0 1241 0 0 1242 0 0 1244 0 0     October 1 http://www.sherrifillipo.com/2015/10/01/october-1/ Thu, 01 Oct 2015 14:10:01 +0000 http://www.sherrifillipo.com/?p=3412 love]]> 3412 0 0 0 1231 0 0 1232 0 0 1230 0 0 October 5 http://www.sherrifillipo.com/2015/10/05/october-5/ Mon, 05 Oct 2015 14:02:48 +0000 http://www.sherrifillipo.com/?p=3420

    An estimated 155,000 Americans are currently living with metastatic breast cancer. This is equivalent to everyone living  in the city of Syracuse, New York having terminal breast cancer.

    Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

    110 women die every day because awareness does not equal a cure.

     ]]>     3420 0 0 0 1245 0 0 1246 0 0 1247 http://maesday.wordpress.com/ 0 0     October 6 http://www.sherrifillipo.com/2015/10/06/october-6/ Tue, 06 Oct 2015 12:50:36 +0000 http://www.sherrifillipo.com/?p=3427 Shot of a cemetery with rows of tombstones with crosses in green grass.

    About 6% to 10% of people are Stage IV at their initial diagnosis.

    This means at the time of their initial diagnosis, the breast cancer cells have already  traveled to the bone, brain, liver or lung.

    The day they learn of their breast cancer, they are also told they are terminal.

    There is no Stage V.

    ]]>     3427 0 0 0 1248 0 0 1249 0 0 1251 0 0     October 7 http://www.sherrifillipo.com/2015/10/07/october-7/ Wed, 07 Oct 2015 12:29:56 +0000 http://www.sherrifillipo.com/?p=3436 There has been a lot of media attention lately about how Stage IV breast cancer is really a chronic disease. Not yet:

    Chronic - persisting for a long time or constantly recurring

    Terminal - predicted to lead to death

    Sand running through the bulbs of an hourglass measuring the passing time in a countdown to a deadline, on a dark background with copyspace
                                                                     Terminal
     
    chronic diseases
                                                                               Chronic
    ]]>     3436 0 0 0 1252 0 0 1253 0 0 1254 http://maesday.wordpress.com/ 0 0     October 8 http://www.sherrifillipo.com/2015/10/08/october-8/ Thu, 08 Oct 2015 12:48:16 +0000 http://www.sherrifillipo.com/?p=3445 quotescover-JPG-92

    ]]>     3445 0 0 0 1255 https://www.mylifeline.org/StephanieSugars/updates 0 0 1257 0 0 1258 1255 0 1259 0 0     October 9 http://www.sherrifillipo.com/2015/10/09/october-9/ Fri, 09 Oct 2015 09:04:36 +0000 http://www.sherrifillipo.com/?p=3448 113 die everyday]]> 3448 0 0 0 1262 0 0 1264 https://www.mylifeline.org/StephanieSugars/updates 0 0 October 13: Metastatic Breast Cancer Awareness Day http://www.sherrifillipo.com/2015/10/13/october-13-metastatic-breast-cancer-awareness-day/ Tue, 13 Oct 2015 13:08:23 +0000 http://www.sherrifillipo.com/?p=3450 3450 0 0 0 1282 0 0 1283 0 0 1284 0 0 1285 0 0 1286 0 0 1287 0 0 1288 0 0 October 12: Reposted from Another Breast Cancer Blogger http://www.sherrifillipo.com/2015/10/12/october-12-reposted-from-another-breast-cancer-blogger/ Mon, 12 Oct 2015 13:13:25 +0000 http://www.sherrifillipo.com/?p=3457 Zen stones balance concept isolated on white
    It used to be that cancer took over and we died quickly . Now we are able to beat it back for a year or two or five if we are lucky. But there is no cure and everybody eventually does die. This means this new generation of cancer patients must live in a strange kind of purgatory, our brains split between life and death. It’s an odd life to mourn your life while you are still living it.
      Ann Silberman Breast Cancer? But Doctor I hate pink This Surreal Life  ]]>     3457 0 0 0 1276 0 0 1280 0 0     October 10 http://www.sherrifillipo.com/2015/10/10/october-10/ Sat, 10 Oct 2015 16:37:43 +0000 http://www.sherrifillipo.com/?p=3467 What in heaven's name does this even mean?? Heaven help me! Please  get me through Pinktober without going crazy. image]]> 3467 0 0 0 1278 0 0 1267 0 0 1268 0 0 1269 1268 0 1270 0 0 October 11 http://www.sherrifillipo.com/2015/10/11/october-11/ Sun, 11 Oct 2015 13:44:48 +0000 http://www.sherrifillipo.com/?p=3473 triple negative According to the National Breast Cancer Foundation, 25% of breast cancers are "triple negative."  This means that the cancer is not fueled by estrogen or progesterone nor is it positive for a certain protein called Her-2. Why this is important: It is more common in younger women, African Americans and Hispanics. Although there are many factors to consider,  triple negative breast cancer is considered more aggressive and the likelihood of spread and reoccurrence  is increased. There is a website dedicated to triple negative  breast cancer if you or a loved one is interested in more information.]]> 3473 0 0 0 1275 0 0 1279 0 0 1281 1279 0 October 14 http://www.sherrifillipo.com/2015/10/14/october-14/ Wed, 14 Oct 2015 13:51:14 +0000 http://www.sherrifillipo.com/?p=3488 Did you know that Breast Cancer Awareness month is also known as Breast Cancer Industry Month? Please don't purchase pinked items believing you are helping find a cure for breast cancer. I wish it was that easy.dont-pink-4-me-200x150

    ]]>     3488 0 0 0     My Week in the Mountains with Jim : A Break From Pinktober http://www.sherrifillipo.com/2015/10/15/my-week-in-the-mountains-with-jim-a-break-from-pinktober/ Thu, 15 Oct 2015 13:54:59 +0000 http://www.sherrifillipo.com/?p=3509 Seconds Before Zip Line                     Seconds Before Zip Lining[/caption] Above you will see a very determined son and a mother who is having second thoughts about going down a zip line (it ends up being nine zip lines but they are quite clever in keeping that off the brochures!) This is the trip to the mountains that I wrote about a week or so ago. The view off the deck was as awe inspiring in person as the photo that I shared with you was. The leaves were at their peak and from the moment we arrived, it was so wonderful to watch my son walk around with his head looking up at all the beauty that surrounded him everywhere he looked (not counting me - I am going downhill fast). A native of North Carolina, I had never been to Grandfather Mountain, which is the highest peak east of the Mississippi. Nor did I know that it actually looks like the profile of an old man lying on his back. The house we rented looked directly at his face. If you squinted, you could see the famous mile high swinging bridge from our deck. The time spent was and wasn't everything I had expected. Jim had a lot that he wanted to talk about from religion, to my health, to an offer he has from a cousin to move to Australia and work with him in his restaurant, to women he has loved and lost. May I just say, by the time our trip was over, my head was spinning. But I wouldn't have had it any other way. He cooked for me every night. Soba noodle stir fry, salmon, rib eye. We would sit and eat in front of the television and watch old reruns of Seinfeld and laugh ourselves silly. He and I have always found the same things funny. Haven't you noticed that it is always more fun to laugh with someone who gets the humor in whatever is taking place? When my son laughs, he squints his eyes shut and a dimple appears in his left cheek. Even at 24, I could look at him forever. After our walking around at Grandfather Mountain, and yes, I gripped the rails tightly and got myself across the bridge, the next day we went zip lining. Oh my word. Ten of us in a group, each taking a turn at a line. Me, last of course with all eyes on me. I felt old and dumpy and for the life of me although I tried to make myself into a cannonball as instructed, the old body doesn't do that anymore. Yes, I was the oldest person in the group. But you know what? My son was so proud. At one point, he was standing behind the instructor, jumping up and down waving his arms back and forth yelling, "Come on Momma! You can do it!" Check that one off the bucket list. After four days, we drove  back down the mountain back to his apartment. We spent the last afternoon doing mega-cooking. He wanted to  try and cook once a week and eat lunches off of his work for five days. So, rice,  beans, pasta, vegetables - we cooked until we were cross-eyed. But I showed him how and he has texted me each day this week remarking on how good his lunches are. Lastly, the most poignant thing he told me and I think you would agree: he said he didn't want to go anywhere until after I was gone. That he wanted to be with me at my side when I died. Lord help me. When that came out of nowhere you can imagine, I almost made that wish come true on the spot. I nearly dropped. But four days alone together gave him the time and space he needed to say what was on his mind. And clearly that was. [caption id="attachment_3513" align="aligncenter" width="300"]Looking ratty, having fun           Looking ratty, having fun[/caption]    ]]> 3509 0 0 0 1289 0 0 1290 0 0 1291 0 0 1292 1291 0 1293 0 0 1294 0 0 1295 1294 1 1296 1295 0 1297 0 0 1298 0 0 1299 0 0 1300 1299 0 1301 1300 0 1302 0 0 1303 1302 1 1308 http://maesday.wordpress.com/ 0 0 1330 0 0 October 16 http://www.sherrifillipo.com/2015/10/16/october-16/ Fri, 16 Oct 2015 12:51:39 +0000 http://www.sherrifillipo.com/?p=3517
    mastectomy scars
    From an article in The Sun (UK): We are Proud of Our Mastectomy Scars
    ]]>     3517 0 0 0 1304 0 0 1305 https://www.mylifeline.org/StephanieSugars/updates 0 0 1306 0 0     October 17: An Open Letter to the Susan G. Komen Foundation http://www.sherrifillipo.com/2015/10/17/october-17-an-open-letter-to-the-susan-g-komen-foundation/ Sat, 17 Oct 2015 13:47:28 +0000 http://www.sherrifillipo.com/?p=3375 Isolated photo of snail and envelope Thanksgiving will mark my third anniversary of living and dying with metastatic breast cancer. I am not celebrating. What I want the Susan G. Komen Foundation to know is that you all have been fighting for breast cancer awareness before I even knew I had breast cancer in 2010. Many years prior to that you were out seeking donations, running races and doing whatever in the name of Susan who died at the age of 36 from metastatic breast cancer - the ONLY kind of breast cancer that kills. It is not chronic; we are not survivors. If you are labeled as Stage IV or metastatic, you will die from your disease. Your progress in fighting this disease has been at a snail's pace. The statistics on your current website are not correct: 99% of people with breast cancer if detected early will survive. This is not fact. I am one of those people who never missed a mammogram and who was diagnosed with early stage disease. After my course of chemo, cancer returned in a matter of 22 months. Again, I say: I never missed a mammogram and my disease was caught early. Running doesn't cure cancer. Being cute and silly with breasts (which I now do not possess) doesn't cure breast cancer; having the NFL wear pink in October does not cure cancer. As Dr. Susan Love has said, "If the NFL is wearing pink, you can be assured that we have reached breast cancer awareness." My thought these days is, if you had placed more money and more emphasis on curing through research and less on other things, I could have turned 50 and not been told that I had cancer in both breasts. I would have given anything not to have had to make the call that day to my husband to tell him - the first words out of his mouth being, "Our lives have been changed forever." No truer words have ever been spoken. I urge you to reassess the way you advertise your statistics and take another look at the limitations of mammograms. And I urge everyone who is serious about getting to the root cause(s) of this disease to turn their donations from Susan G. Komen Foundation to Metavior, (www. metavivor.org), where 100% of all donations goes toward research - where the answers to our pain lies.]]> 3375 0 0 0 1321 0 0 1309 0 0 1310 0 0 1311 0 0 1313 0 0 1314 0 0 1315 0 0 1393 http://mstakesme.wordpress.com 0 0 October 18 http://www.sherrifillipo.com/2015/10/16/october-18/ Fri, 16 Oct 2015 19:14:58 +0000 http://www.sherrifillipo.com/?p=3524 think-b4-you-pink

    ]]>     3524 0 0 0     October 19 http://www.sherrifillipo.com/2015/10/19/october-19/ Mon, 19 Oct 2015 04:13:29 +0000 http://www.sherrifillipo.com/?p=3543 When you are living and dying with breast cancer each and every day, at least for me, my humor goes to strange places. Like last Friday. I have a visit from my hospice nurse every two weeks. It is just regulation. I don't have much to say but she does my vitals and we talk about how I am feeling. Friday, I got off on the Susan Komen Foundation before she took my vitals and by the time she took my blood pressure it was 130/110! For those not in healthcare, that is nearly stroke worthy! I knew this month was killing me (no pun intended) but holy cow! We both just laughed;  she did say she was going to take it again...then she told me that she was transitioning to another position and that we would have only one more visit together. I wondered to myself how many hospice patients get to say that they outlasted their hospice nurses. Oh well. By the time she left, my pressure was down to 110/90 not great but better. She felt safe enough to leave and go on to her next patient. I knew Susan Komen was getting to me. Now I have physical proof! Only a few days left. I am going to try to hang on.]]> 3543 0 0 0 1323 0 0 1329 0 0 October 20: Moths and Rust http://www.sherrifillipo.com/2015/10/20/october-20-moths-and-rust/ Tue, 20 Oct 2015 13:36:10 +0000 http://www.sherrifillipo.com/?p=3549 butterfly on a rusty metal background On Sunday morning, I woke up on the outer banks. Last week I was in the western most part of NC with my son and this week I am on the eastern tip of NC with Beloved. The weather is sunny but windy. We have done our usual errands and eaten at our luncheon spot where we get 20% off because we are "locals" and have the local card to prove it! (I love giving them that card.) When we got back from lunch today, Beloved wanted to do some patio clean up and asked me to look at a stack of chairs that had not weathered the year well. While we should have kept them in the garage, we did not and the legs on all were disintegrating in rust. I immediately thought of that verse, "Do not store up for yourselves treasures on earth where moths and rust destroy, but store up for yourselves treasures in heaven where moths, rust and thieves do not break in and steal. Matthew 6:19-20. Something that was once so strong and steady  I now looked down at crumbling and powdery chair legs. Which leads me to this funny but biting book I am reading, Primates of Park Avenue, by Wednesday Martin.(I know, last time it was a homeless donkey.)  She is an anthropologist who moved to Manhattan to raise her family, hence the name of the book. It is a fascinating inside look on the unwritten rules of the upper east side of Manhattan. From clothing, to nursery school selection, everything is of dire importance. She has both the inside and outside perspective to write about it. Along with my rusting chair legs, I thought about these women who spend millions of dollars annually to either climb to the  top of this imaginary social ladder or spend millions to stay there. All for what? Just like the verse said, it (furs, apartments, ivy league college degrees, cashmere sweaters for the toddlers etc.) will all be gone in a twinkling of an eye through decay, moths, theft or ultimately death. I wish I had gotten that earlier in life. But I get it now and have for a few years. I can honestly say I am attached to nothing material. It has all faded away already in my sight. It is freeing. If I had to do it all over again, you betcha I would have done things differently. Lucky for me (and you) we have a loving God Who doesn't hold it against us. But the book is funny...]]> 3549 0 0 0 1335 0 0 1326 0 0 1327 0 0 1328 0 0 1331 0 0 1332 0 0 1333 0 0 1334 0 0 1349 http://Plummer 0 0 October 21 http://www.sherrifillipo.com/2015/10/21/october-21/ Wed, 21 Oct 2015 13:15:55 +0000 http://www.sherrifillipo.com/?p=3553 Birthday candles on blue background     Momma When She is NOT in the creek                                        ]]> 3553 0 0 0 1336 0 0 1337 0 0 1338 0 0 1339 0 0 1340 0 0 1341 0 0 1342 0 0 1343 0 0 1344 0 0 1345 0 0 1346 0 0 1347 0 0 1350 0 0 October 22 http://www.sherrifillipo.com/2015/10/22/october-22/ Thu, 22 Oct 2015 14:28:14 +0000 http://www.sherrifillipo.com/?p=3564 3564 0 0 0 1348 0 0 October23 http://www.sherrifillipo.com/2015/10/23/october23/ Fri, 23 Oct 2015 15:19:14 +0000 http://www.sherrifillipo.com/?p=3567 image]]> 3567 0 0 0 October 24: The Mysterious Book http://www.sherrifillipo.com/2015/10/24/october-24-the-mysterious-book/ Sat, 24 Oct 2015 13:45:55 +0000 http://www.sherrifillipo.com/?p=3573 pages of a book curved into a heart shape

    This week a friend and I had some time to sit in the warm autumn sun and read. Well read and talk. Talk and read. We happened to be in a grocery store of all places when she decided she needed a paperback. I hadn't brought my kindle along so I knew I couldn't read my ipad outside, so the first time in a long time, I was looking at paperbacks too. As you would imagine, the selection is not quite like Barnes & Noble but there were about a dozen books to choose from. As you know I read odd things. Nothing in the racks even remotely drew me to it until I saw this one book. It looked a little out of place but I didn't know why. I showed it to my friend and then I noticed that it was a used book! On the shelf of a grocery store. They don't sell used books. I looked again and the price sticker was torn off and on the inside sleeve was an internet address where I suppose  this suspicious book originated. My friend and I began to dream up reasons why this book was sitting amongst new ones. And we couldn't come up with anything EXCEPT someone placed it there and wanted someone to pick it up and read it. But why? It was not a religious book, not a self-help book but appeared to be one of those 'women's books' as  I call them, the ones that I tend to steer clear of. My friend chose her book and true to her nature walked up to the cashier with the odd book as she calls it and said, "Look at this book! It's used. What in the world do you think?"  The cashier scanned it and the scanner made a sound like, "This isn't ours." And she scanned it two more times before my friend said, "I guess I can have it right? It's not from here." The cashier was more flummoxed than anything as my friend put the free book in her bag. We walked out laughing. She handed it to me in the parking lot and told me I had to read it first. "See what this stranger wants us to get out of this." So I got right to it. Right off the bat the character who narrates the story has just lost a friend to cancer. "Great," I thought, "Just what I needed." And it was one of those books where you just knew everything was going to work out in the end - I can't stand being taken down a literary road  when I can sit there and basically write the story myself. I finished the book fairly quickly and my friend waited the two days while I read wanting to know the 'secret.' I even had to wade through a section on hospice though it was a minor portion of the book. I did think while reading that God is funny. What I don't need to read about is someone losing a friend to cancer nor how this young man dies in hospice but hey there I was. In the end one of the characters says the most poignant thing in the book: The three most important things in life are the three things that you cannot prove: faith, hope and love.. While  I didn't love the book, that statement made perfect sense to me. One of my favorite verses to quote to left-brained scientific types (to me the hardest to have faith talks ) is this: But now faith, hope, love,  abide these three; but the greatest of these is love. 1 Corinthians 13:13 And another: Now faith is the assurance of things hoped for, the conviction of things not seen. Hebrews 11:1. While I will never know why this mysterious lady dropped off a used paperback at the local Food Lion, I appreciate the verses that popped into my mind when one of the characters spoke of faith, hope and love. These are treasures you can store up. No moth or rust can take these away from you. Two nights ago when I was reading this book, I looked up and on my wall was a butterscotch colored moth. A gentle God reminder...          ]]>     3573 0 0 0 1351 0 0 1352 0 0 1353 0 0 1354 0 0 1356 0 0 1365 1356 1     October 25 http://www.sherrifillipo.com/2015/10/25/october-25/ Sun, 25 Oct 2015 12:49:34 +0000 http://www.sherrifillipo.com/?p=3583 virus As everyone surely has heard by now, new guidelines on the minimum age for initiating mammograms has a lot of women up in arms. As a woman who had dense breasts, I indeed had multiple core needle biopsies through the years that ended always being negative. Was it nerve wracking? You bet it was. For awhile I was on a six month plan. At one point, I turned to the radiologist and said," I think next time I feel one of these little lumps, I think I'll keep my mouth shut." He responded, " No you don't. Every so often, one of these lumps shows up as cancer." Two years later, there I was. Again having two core needle biopsies. I didn't need to be the former OR nurse that I was to read the faces of the procedural staff to know these were not cysts. Three days later I got 'the call' and was told I had bilateral invasive breast cancer. So, I still I must balance my anecdotal story with science: Mammograms only capture 26% of  lesions where it will make a life-saving difference. Mammograms diagnose lesions that would have never gone on to become malignant. Mammograms also diagnose lesions that despite early detection will go on to become life-threatening (like mine). While mammograms are a vital tool in the breast cancer fighting arsenal, they are not foolproof. Everyone needs to accept their limitations no matter which professional association you align yourself with philosophically.    ]]> 3583 0 0 0 1355 http://www.mylifeline.org/stephaniesugars 0 0 1357 0 0 1366 1355 1 October 31: Oh How I Love Satire and the end of Pinktober! http://www.sherrifillipo.com/2015/10/31/october-31-oh-how-i-love-satire-and-the-end-of-pinktober/ Sat, 31 Oct 2015 12:07:15 +0000 http://www.sherrifillipo.com/?p=3591 image From the BFNN (British Fake News Network):  A  woman from Dorset who remained unaware of breast cancer up until this month has spoken of the moment she heard of the disease, checking her Facebook before bed on October 11th. “I’ve heard of all the other types so I’m just glad there was a month dedicated to people like me, who’ve not heard of breast cancer”, she said in an interview on Saturday. “Now I’ve become aware, I hope they can knuckle down and find a cure. I’m just sorry it took so long for the message to reach me.” Various breast cancer charities including Cancer UK and Marie Curie announced that next October would be renamed “finding a cure for breast cancer month”. Scientists, whose work had been put on hold until everyone was made aware of the illness, have now been given the go-ahead to begin searching for a cure.]]> 3591 0 0 0 1380 1379 1 1373 0 0 1374 0 0 1375 1374 1 1376 1373 1 1377 0 0 1378 1377 0 1379 0 0 1383 0 0 1386 0 0 October 26: The Moth and Rust Analogy Continues http://www.sherrifillipo.com/2015/10/26/october-26-the-moth-and-rust-analogy-continues/ Mon, 26 Oct 2015 15:39:33 +0000 http://www.sherrifillipo.com/?p=3595 flame I hadn't planned on continuing the theme of "moth and rust" but I have to. Last night I received a message that one of my nephews came home to find his house being destroyed by fire (firemen still there). He lost everything including a beloved pet. His words to me were, " I am ok. But I have lost everything. I am so sad about my dog but I am fine. Pray for me." That was all the message said. The "thief" of fire indeed stole everything this young man had. But he told me he was ok. I was so humbled to hear him say it. And it reminded me, young or old - sick or well, everything can be taken from you. I am on one extreme, he on the other. Offer up a prayer if you would for him.]]> 3595 0 0 0 1362 1359 0 1363 0 0 1359 0 0 1360 0 0 1361 0 0 October 27 http://www.sherrifillipo.com/2015/10/27/october-27/ Tue, 27 Oct 2015 12:42:58 +0000 http://www.sherrifillipo.com/?p=3600 3600 0 0 0 1364 0 0 1367 0 0 1381 https://www.mylifeline.org/StephanieSugars/updates 0 0 October 28 http://www.sherrifillipo.com/2015/10/28/october-28/ Wed, 28 Oct 2015 10:44:57 +0000 http://www.sherrifillipo.com/?p=3615 Sand running through the bulbs of an hourglass measuring the passing time in a countdown to a deadline, on a dark background with copyspace

    From The New York Times article Helping Patients and Doctors Talk About Death:

    Researchers at the Johns Hopkins School of Medicine in Baltimore used a national survey containing exit interviews with the next of kin of nearly 2,000 cancer patients who died between 2000 and 2012. Patients who had end-of-life discussions with doctors and those who created living wills, which describe the kind of care a person should receive, were most able to avoid having treatments that they did not want imposed on them. Patients who relied solely on designated health care proxies to make decisions if they were incapacitated were often subjected to aggressive last-minute care.

    The lesson seems clear. End-of-life discussions involving all parties — doctors, patients and surrogates — are crucial to ensure that people’s preferences are specified and understood by everybody.

     ]]>     3615 0 0 0 1369 0 0     October 29 http://www.sherrifillipo.com/2015/10/29/october-29/ Thu, 29 Oct 2015 10:56:13 +0000 http://www.sherrifillipo.com/?p=3623 tshirt

    Blessedly coming to an end of this pink-washed month, I feel duty bound to remind everyone that men too get breast cancer. It is just as ravaging for men except that they aren't as vocal about it sometimes because it is seen as a "woman's disease." Nevertheless, 2360 men will be diagnosed this year and 430 men die from this disease. For more information on breast cancer from a man's perspective click on this link male breast cancer.]]>     3623 0 0 0     October 30 http://www.sherrifillipo.com/2015/10/30/october-30/ Fri, 30 Oct 2015 11:11:37 +0000 http://www.sherrifillipo.com/?p=3628 Beautiful smiling african american woman Sisters Network, Inc. founded in 1994, is a leading voice and the only national African American Breast Cancer survivorship organization in the United States. According to the American Cancer Society African American 2013-1014 Cancer Facts (as stated in this website) it notes some very serious information about this disease as it relates to this population:
    Breast cancer is the most commonly diagnosed cancer among African American women. An estimated 27,060 new cases of breast cancer [was] expected to occur among African American women in 2013. Among younger women (under age 45), the mortality rate of breast cancer is higher in African Americans than in whites. The median age of diagnosis is 57 years for African American women, compared to 62 years for white women. Breast cancers diagnosed in African American women are more likely to have factors associated with poor prognosis, such as higher grade, advanced stage, and negative hormone (estrogen [ER] and progesterone [PR]) receptor status, than those diagnosed in white women. Furthermore, premenopausal African American women in particular appear to have a higher risk for triple-negative (ER negative, PR negative, and  human epidermal growth factor receptor [HER] 2 negative) and basal-like breast cancers, which are distinct but overlapping aggressive subtypes of breast cancer that are associated with shorter survival.
    ]]>     3628 0 0 0     One's Career: Here Today, Gone Tomorrow http://www.sherrifillipo.com/2015/11/02/ones-career-here-today-gone-tomorrow/ Mon, 02 Nov 2015 13:59:48 +0000 http://www.sherrifillipo.com/?p=3633 surgical instruments and tools including scalpels, forceps and tweezers arranged on a table for a surgery A relative of mine had surgery last week and I got to spend the day in the pre-op/ post-op areas of the Operating Room. For those who don't know, I worked in the perioperative field for a number of years (in the OR rather than before or after surgery). Although I have certainly been in my share of ORs in the last five years, this was the first time in a long time that I found myself standing beside the bed instead of lying in one. I found myself nostalgic for every beep of the monitor - the chatter I could hear behind the curtain, even the smells - I know I am bizarre. I began to have a longing that I haven't known in quite a while. I was ready to jump in and start helping out (and in a few cases sharing my opinion on what was not correct - forever the patient safety person). It was all I could do not to chime right in every time someone new came into view. I questioned the gauge needle that was being used to start the IV. I questioned the draping that the anesthesiologist was using to put in a nerve block. I tried to tie my tongue in a knot but it kept unraveling providing all kinds of unasked for advice. I don't think I was a pain in the rear but you can never tell. At the end of a long day, I was more aware of how much I missed being in that environment. How very much I missed being asked questions (I was a geek for all things dealing with policies, accreditation; it could be quite embarrassing at times). But it was evident that this group, this OR, this hospital has been running smoothly without me and this is what stung the most if I am to be honest. I liked being needed and having the answer to that strange but necessary OR question. All the while, I know God removed me from that environment and has placed me squarely here in front of this computer. In a painful way but a necessary way, this day in the surgery arena reminded me in the scheme of things how small I am and at the end of the day whether one leaves a career through disease, retirement or death, the world goes on. What doesn't change is God. Sometimes I act like I am the sun and all revolves around me. As nostalgic as that day was, it forced me to acknowledge yet again, that those days are over. For good. And I must focus on the tasks at hand while I have the strength.]]> 3633 0 0 0 1384 0 0 1385 0 0 1387 0 0 1388 0 0 1389 1384 1 1390 1385 1 1391 1387 1 1392 1388 1 1454 0 0 New York Times: A Growing Disenfrancnchisement With October "Pinkification" http://www.sherrifillipo.com/2015/10/30/new-york-times-a-growing-disenfrancnchisement-with-october-pinkification/ Fri, 30 Oct 2015 12:43:31 +0000 http://www.sherrifillipo.com/?p=3652 Pink_ribbon "..,Breast cancer awareness,” critics charge, has become a sort of feel-good catchall, associated with screening and early detection, and the ubiquitous pink a marketing opportunity for companies of all types. For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones. “What do we have to show for the billions spent on pink ribbon products?” asked Karuna Jaggar, the executive director of Breast Cancer Action, an activist group whose slogan is “Think before you pink.” She concluded: “A lot of us are done with awareness. We want action.” Read the entire article here NY Times Disenfrancnchisement of October "Pinkification"  ]]> 3652 0 0 0 1370 0 0 At My Old Stomping Grounds http://www.sherrifillipo.com/2015/11/03/at-my-old-stomping-grounds/ Tue, 03 Nov 2015 14:10:06 +0000 http://www.sherrifillipo.com/?p=3663 Red blood cells isolated on white

    Guess where I was on Monday? You couldn't even begin to guess it  based on past blogs so I will tell you. I found myself visiting my nurses at the oncology infusion center getting a lab drawn. What? I know. I am under the watchful eye of Hospice but my team is the definition of patient-centered. At my hospice visit on Friday I was being handed off to another nurse. Remember, I outlived my last one - not really but she is taking another position within the organization and will not be seeing patients. So Friday was a day to catch up the 'new' nurse who is actually the director of the facility, if I have my terms correct. So we discussed my medications, some of my desires etc. to get this nurse up to speed and then my current nurse asked me if I was still thinking about hospice in NC when the time came. She and I have had multiple talks about the difficulty of having friends and family in NY, PA and NC. I told her the most frustrating thing about his disease is not fully understanding the decline - what it looks like, how long it takes etc. She smiled and said I spoke for every patient in hospice who would like to know how their disease plays out. I told them both when I was helping my relative with surgery last week, as we walked through Radiology, I said I was going to sneak myself in the PET scanner and push myself through to see what was going on inside. Then my nurse asked me about the tumor marker that I always talked about. When I explained it again, my 'new' nurse said, "Would that help you mentally determine where you are in the disease process? Would that relieve you from some stress?" Wow. I almost kissed her. (Along with everything else, I now have high blood pressure.) The one thing you know when you are in hospice, though they are quick to offer morphine, they do not ascribe to treatment. We are technically beyond that. I said yes, that would help my blood pressure and my mental state just to have an update. It would also help me (in a small way) continue to figure out plans. I was never more appreciative of a patient-centered care model until that moment. Tomorrow I will get the results. OK: What lab do I continue to perseverate about? It is a CA-27 29 which is considered a tumor marker. Less than 38, means there is no active cancer in your body. Above 38, means cancer is likely present. Don't everyone run out and get one. A year or so ago, my oncologist began having them drawn when I was off chemo as a way to measure what was going on. It is quicker and easier than jumping up on a PET scan table. But it is not the perfect test, just one tool in their arsenal that helps both patient and doctor make clinical decisions. I am thankful for the care I am receiving at hospice and continue to hold them out to you as an option if you are like me and have ended treatment. You do not have to be at death's door to reap the benefits of this great organization.]]>     3663 0 0 0 1396 0 0 1394 0 0 1395 0 0 1397 0 0 1398 0 0 1399 1398 1 1400 0 0     Sometimes You Win, Sometimes You Lose http://www.sherrifillipo.com/2015/11/04/sometimes-you-win-sometimes-you-lose/ Wed, 04 Nov 2015 17:14:37 +0000 http://www.sherrifillipo.com/?p=3670 Medical test tubes with blood in holder on white backgroundLast year I was in NC the weekend of the Super Bowl. My dad's side of the family celebrates anything sports-related with great gusto. I mean people dress up to support their team(s) the nachos, wings and wine flow and everyone down to the smallest child cheers and boos with great fervor. So, when Mom, Dad and I arrived at the host's house, it was already full and the enthusiasm was at a crescendo. Over at one of the tables, a family member was deeply ingrossed with designing something on poster board that I can only explain to you looked like a GIGANTIC bingo board. I knew we weren't playing bingo that night but for the life of me, I had no idea what it was. About a half hour later, my dad handed me $5 and told me to go over to the board. When I walked over, I was told to sign my name in one of the boxes. What? Nothing was written on it. It just looked like a huge poster with a 1000 little squares. Maybe I am the one who is square and you are reading this knowing exactly what was going on. I have lived a sheltered life, I didn't, but I did obey and chose some random square and wrote my name. I walked away and forgot about it.

    We had a great time that night but right now, in front of this computer, I couldn't tell you who was playing, only that the nachos were exceptionally good! We left before the game ended. And soon after we arrived back at Mom and Dad's, I said good night and went to bed. Before long, I got a quiet knock on the door and Dad said, "Sherri?" I woke up and answered, "Yes, is everything ok?" He responded, "You just won $100 in the Super Bowl pool!" What? Apparently after everyone signs their names, teams, points, spreads, are added, I don't know the words, I am just making this up but who cares, I won money while I slept! I said, "Wahoo!" And went back to sleep.

    Later on he came back, "Sherri? You just won another $50!" I decided I might just stay in bed forever as it seemed the longer I slept, the more money I seemed to be making! Suddenly, this game was really fun.

    Fast forward to today. I have been waiting for that tumor marker to come back. For some reason, it takes a three day trip to Pittsburgh and then comes back and tells you what the number is. I have thought about that game, knowing that some games you win, and some games you lose. I won the Super Bowl game but I know I will not win the CA 27, 29 game. The last time I had this lab drawn in July it was 126. It came back today, as expected, higher at 235. So what does this tell me? That the cancer continues to progress. (I haven't had chemo since March.) It doesn't say much more than that but just knowing has helped me. I can't fully explain why. I continue to pray and plan. Maybe to counterbalance this, I need to make sure I am in NC for Super Bowl this year.

    ]]>     3670 0 0 0 1402 0 0 1403 0 0 1404 0 0 1405 0 0 1406 0 0 1407 0 0 1408 1407 0 1409 0 0 1411 1408 0     Follow-up From Yesterday - Another Perspective http://www.sherrifillipo.com/2015/11/05/follow-up-from-yesterday-another-perspective/ Thu, 05 Nov 2015 17:36:08 +0000 http://www.sherrifillipo.com/?p=3676 3d rendered illustration of the male liver

    I was rightly corrected yesterday after I posted the results of my tumor marker. While < 38 does indicate no cancer and >38 does  indicate cancer is present or has returned, the higher the number does indicate that the cancer continues to progress but using it as a distinct maker (like a ruler where incrementally the larger the number, the longer/larger the object) is not accurate. I know that as a nurse, deep down, but the patient in me wants the number to tell me something. So while I know that it is progressing, my close tracking of the numbers doesn't really mean anything. This is when science/medicine isn't as black and white as the community at large wants it to be. (Me included.) Going from 126 to 235 like I did for some seems like a huge jump, for others it doesn't indicate much of an increase at all. And then if you take what my number was three autumns ago when my metastatic disease was first diagnosed, yesterday's values were higher than those from 2012. So, while I am happy to know the current number, I must admit my oncologist was right when she told me months ago, at this point, the subjective information I give her means more than a tumor marker number. So subjectively? My ribs are not being compliant. And this is what I would tell her if I were still receiving treatment. This is the subjective data that would mean more to her than the number 235. I would tell her that I am feeling pressure up under my right rib cage - well what do you know - that is where my liver lies and it is beginning to push against the ribs as the cancer progresses. Why my ribs on the other side pinch and pull? Anyone's guess. And that is all that it is now. The definition of palliative care: to take care of the symptoms of a disease. A little heat, medication for pain etc. I continue to need to re-frame my thoughts. And start being content with this stage of my disease. But sometimes there is such a battle between nurse and patient going on inside my head that  I am sure on certain days, that is the cause of my headaches.]]>     3676 0 0 0 1416 1413 1 1415 1414 1 1413 0 0 1414 0 0     Momma Jane and Interior Design http://www.sherrifillipo.com/2015/11/06/momma-jane-and-interior-design/ Fri, 06 Nov 2015 12:56:03 +0000 http://www.sherrifillipo.com/?p=3680 upholstery tapestry color selection Well, lest you think Momma Jane had gone into retirement, you would be wrong. With the month of October behind me, I now have time to catch you up on your favorite topic - my mother. She is currently on the hunt for a couch which seems like a rather mundane, easy enough task but you are not my mother. She takes to a project like hunting for a rare and unusual bird in the Amazon.  I called her yesterday and she picked up the phone and said, "Can't talk to you now..am looking at fabric..fabric everywhere. I'll call you on my way home." On her way home? It was then that I understood that she was indeed on an expedition and about two hours west of her home. Although she lives in an area where I am sure there is enough fabric to cover every couch in the state of NC, she believes the best shade of taupe is right over the next hill. And off she went to find it. On her way home, she indeed called me to tell me she had spent all day looking at fabric but, "it was so dark in there, you couldn't really see a thing. Shades of taupe are difficult to differentiate without adequate lighting." I teasingly told her she should have taken a flashlight and she agreed. I was kidding; she was not. So, she moved on from the fabric for the couch to the color of the walls which most of the entire house has been painted. She describes the color as "baby diaper poop-colored." I would say it is a shade in the wheat/gold family. And she wants to repaint. "How in the world are you going to re-paint the house without Dad knowing?" (Because like many men, the paint is not old, not chipped and therefore perfectly fine.) She answered, "I am going to start in the back bedrooms and he will never know the difference." Yes, she said that. I kid you not. Like one day he is going to come home and she will have worked her way to the living room where he will find a ladder in the family room; he will walk over,  hang his suit jacket over it and go make a drink - with nothing said. So, speaking of Dad. She then moved on from couch fabric to re-painting the ENTIRE inside of her home to: "Do you know what I caught your father doing two nights ago?" I began to sweat not knowing what she was going to say. I have to admit I was a little scared. "He came home from work and was vacuuming the house!" But she was quasi-yelling it through the phone. So, I say, "Mom, isn't that a good thing?" "NO!" she yells, "I had just told him that I had spent last week cleaning the entire house, you know, pulling furniture out from the walls and really giving it a good cleaning...and the nerve...I come home and he has vacuumed..over my vacuuming!" "Mom," I said, "Listen. Unless you come home one day and find the man in one of the back bedrooms that you have secretly re-painted looking at porn, I think you should give the man a break!" "But I had JUST vacuumed it!" "Mom, if my housekeeper came back the next day and began vacuuming my apartment, I would just sit there and smile at her and say, "Jeanette, I am so happy to see you and let that woman re-vacuum my rugs." By that time, I had Momma laughing so hard, I was nervous about her driving as it was nightfall and it was raining. But heaven! My dad is a saint.    ]]> 3680 0 0 0 1417 0 0 1418 0 0 1419 0 0 Miss Dickinson http://www.sherrifillipo.com/2015/11/09/miss-dickinson/ Mon, 09 Nov 2015 13:24:10 +0000 http://www.sherrifillipo.com/?p=3699 corning

    On Friday evening, instead of heading off to  happy hour, I was meeting with my Hospice chaplain and having communion. I must admit, that was a first for me. In home communion. One of the benefits of being a hospice patient is your accessibility to spiritual support if desired. And I desire. My chaplain is a dear, sweet gentleman who is a good listener and good counselor. There is not an agenda and as he does not visit when my nurse does, I update him on my physical condition and we move on from there. I am so thankful to have him and for him to be preparing for my service when that takes place in the future. I have not done a good job finding a church home during my time here and it is the first time I have not had a tie to a minister. This chaplain arrived just in time. And as I wrote last time, he is the one who suggested that he could perform my service and reminded me that my friends here wouldn't necessarily be able to travel to NC if that is where I end up being. I think it would have taken me quite a while to put that all together so I appreciate that he is one step ahead of me. Which takes me to my second topic. Corning, as you know, is a small, small town. The smallest I have ever lived in. And though I know everyone knows pretty much everyone, I never cease to be amazed at that fact. So last week, I went in for my regular hair appointment and as my stylist, Dustin and I were talking , he said, "Sabrina was in here last week." If you will recall, Sabrina was my chemo infusion nurse until she up and left me but that is another story which you can read here. "And we got to talking." Remember also that Dustin is who I have my champagne Wednesdays with a couple of times a month and during one of our recent afternoons, I shared with him a song that I desperately want sung at my Corning service, on the bridge, led by the above mentioned chaplain. The song was sung by an African American man - he had taken a poem by Emily Dickinson and set it to music and then sang it a capella at an arts festival a couple of years ago. The juxtaposition of this black man singing a Dickinson poem was about more than I could bear. It touched my soul. Dustin loved the song and I didn't think anymore about it. Until I was sitting in his chair and he said, "Sabrina asked about you. And I told her you were on the hunt for a handsome African American man to sing some Emily Dickinson poem at your funeral." And then we both burst out laughing at how crazy that sounded when said out loud. Why I didn't think about this I will never know, maybe because this area of the world is one of the least diverse places I have ever lived. But I am not one to be thwarted. And I knew I would find the right person to sing this song...Sabrina replied back to Dustin, "Does she not know me well enough to know I can handle that? That I am married to a handsome African American man who can sing?" Oh glory! It had not dawned on me. I have not heard back but I am hoping against hope that he will agree to do it. Nor did I remember that she leads her church choir. And I wonder if it would sound even that much better with a whole group of people standing on that bridge booming out that delicate poem of Miss Dickinson's. Stay tuned.]]>     3699 0 0 0 1420 0 0 1421 0 0 1422 0 0     Miss Dickinson's Poem: Farewell http://www.sherrifillipo.com/2015/11/09/miss-dickinsons-poem-farewell/ Mon, 09 Nov 2015 15:23:24 +0000 http://www.sherrifillipo.com/?p=3708 horses in sunset

    I had no idea the amount of interest there would be to see the poem that I am having my friend sing but here it is.  The title is Farewell:

    Tie the strings to my life, my Lord, Then I am ready to go! Just a look at the horses— Rapid! That will do!

    Put me in on the firmest side, So I shall never fall; For we must ride to the Judgment, And it's partly down hill.

    But never I mind the bridges, And never I mind the sea; Held fast in everlasting race By my own choice and thee.

    Good-by to the life I used to live, And the world I used to know; And kiss the hills for me, just once; Now I am ready to go!

    ]]>     3708 0 0 0 1423 0 0 1424 0 0 1425 0 0 1426 0 0 1427 0 0 1434 0 0     Louie, Louie and Away We Go http://www.sherrifillipo.com/2015/11/10/louie-louie-and-away-we-go/ Tue, 10 Nov 2015 14:51:06 +0000 http://www.sherrifillipo.com/?p=3716 paint

    It's not that I was having a bad day yesterday, I simply didn't want to leave my apartment and I didn't want to get out of my pajamas. So there. I 've said it. As sedentary as I am by nature, I would make the perfect prisoner for in-home incarceration. But I digress. And with my sedentary lifestyle, my appetite has slowly shut down to nothing.  Most of the time, I no longer have that hunger urge that makes me rummage through the refrigerator. All fine and well except I am not seeing any weight reduction along with this lack of appetite. Now that makes me crazy. Until yesterday afternoon when sitting in my pajamas reading a book did I have this sudden urge for a sandwich from across the street. I have learned if I have any food urge to go ahead and give in to it as another urge may not come for days. So, I put a pair of pants on and walked across the street. Ordered my sandwich and was waiting on it when I saw one of the managers walking this frail, elderly man out to the sidewalk, wishing him well. I stood a few more minutes, got my sandwich and walked out headed back to my apartment. There only 1/2 block down the street shuffled this old man with his cane - right up against the storefront windows - I suppose the edge of the buildings was keeping him headed in the right direction. I walked up to him and asked him if I could help him get home. Heck, I had nothing better to do and had not been outside in a couple of days. He grinned and said, "Sure." He took my elbow, put his can in the crook of his other arm and off we went. He told me he could only see shadows and that he tried to get out before nightfall. With the time turned back, it gave him less time to get his errands done before it got dark. He was a sweet 93 year old gentleman who said his name was Louie and he had taught art in the school system K-12 during the day and adult art classes at night. As we talked, he looked over at me and said, "You are a pretty girl." "Now, Louie. Quit fibbing. You just told me you could only see shadows. But wait. You know what? I might just BE pretty in shadows. I take it back!" He roared laughing. "Well," he said, "You have a pretty walk." We were inchworming it down the sidewalk. Where that came from I will never know. Must be from back in his day as a young artist that he used these phrases and he was trying them out again. I knew there were a set of apartments behind the Radisson but I didn't have any idea where he lived and with the sun setting quickly I could see us out there both stumbling around. I didn't tell Louie I was a certified "falls risk patient" as I was afraid he would try to run away from me. "Now, you know we need to pass the library and then the ice skating rink..." "Yep, Louie. We have already passed them." "What? I have never walked this fast in my life!" (If you could have only seen us. Fast is not the word you would have ascribed to us.) "Okay. You will see a curved sidewalk on the right and a parking lot on the left. We will take a right." And so we did, leading us up to the backside of a non-descript apartment building. I had no confidence that this one was right. After all, he only sees shadows and I am always lost. He pulled out a key attached to his belt buckle, turned back to me and said, "Let's see if you got me home." Sure enough the key fit and he opened the door. Just in time as the sun was setting fast. He turned back to me and said, "I had the best time. You are the first person I have talked to all day." "Louie," I said, "Me as well." We both laughed. As the apartment door closed, I yelled back, "And don't try to act like you don't know me when you see me with my husband on Market Street!" He giggled and walked inside.  ]]>     3716 0 0 0 1428 0 0 1430 https://www.mylifeline.org/StephanieSugars/updates 0 0 1431 0 0 1433 0 0 1435 0 0 1436 0 0 1437 0 0     Looking Back http://www.sherrifillipo.com/2015/11/11/looking-back/ Wed, 11 Nov 2015 15:41:26 +0000 http://www.sherrifillipo.com/?p=3725 CalendarsMy grandmother on my father's side lived to be 94. Lived on her own in a modest home in NC right up to the end. Her mother, my great-grandmother lived to be in her late 80's I think, I do know that she died when I was in my early 20's so I knew her very well. She once told me that she was so tiny, that as a baby they used her father's handkerchiefs as diapers and would pin her to pillows on their couch. It sounds like a fairytale to me but that is the story she stuck by. The family story goes on to reveal that a traveling salesman came through the mountains of NC and impregnated my great-grandmother at the age of 14. My grandmother was her only child. My great-grandmother never went to school, never learned to read nor write and never drove a car. It is hard to imagine.

    With only 14 years difference between the two, they were more like sisters than mother and daughter and they would love and fuss like sisters as well. My grandmother worked in the tobacco factories of Winston-Salem for as long as I can remember. She got up at dawn, fixed a full breakfast for my grandfather, my dad and my uncle. She worked all day and then came home, made dinner every night which included biscuits rolled out by hand and then my mother once told me, my grandmother spent every evening ironing shirts for the three men in her house until she dropped into bed at night. What a life. It would be tough enough if you had a loving supportive spouse but she did not. When my grandfather died in his early 60's, she continued on working. Remarried, divorced him! Then in her final years, met up with a friend from back in her younger years. He was several years older but they lived happily for 10 years or so until she buried him. And then again, she was alone. Retired, of course but alone. When I was living in NC I would go and see her. But I confess (and this is the point of this rambling post) not as often as I should have and when I went, I didn't stay as long as I could have. Now, that my life is a lot like hers, I think about her a lot. When she opened the door, she was always happy to see me. Her modest home, neat as a pin. Nothing out of place and I could always hear the faint ticking of a clock somewhere in the house. Otherwise, perfectly quiet. Don't get me wrong. My uncle lived near her and he along with his wife and their four kids were all very close to her and took care of her nicely for many years. But as the kids became adults and moved away, there she sat day in and day out. Like me. I sit here and often wonder what she thought about. What she did to busy herself. She didn't read, didn't knit or do other handiwork. All of her friends were long gone. And when I think how long, how many years she sat, it makes me sad. Some days, I look around and wonder, "When Lord?" Surely living until 94, she had many, many similar days. I never heard her complain. She never once said, "I wish the Lord would take me on." She just sat. The epitome of the verse that says, "Be still and know that I am God." I will always wonder what she did day after day - year after year in that quiet, clean house. I should be able to tell you, but I can't. And I regret that.]]>     3725 0 0 0 1438 0 0 1439 0 0 1441 0 0 1610 http://maesday.wordpress.com/ 0 0     Duct Tape Prayer http://www.sherrifillipo.com/2015/11/12/duct-tape-prayer/ Thu, 12 Nov 2015 17:07:37 +0000 http://www.sherrifillipo.com/?p=3733 duct tape

    When I met with the chaplain last Friday evening, he asked me about my devotion time and I remarked that I have a much richer time in the mornings than I used to for a couple of reasons: I no longer work and therefore do not stumble out the door in what feels like the middle of the night ( I am NOT a morning person) and also now that I am much more sedentary, it fits my way of life. I am happy to now wake up when I wake up, have my coffee, catch up with the news that has occurred overnight and by the time John, my morbidly obese cat has plopped down in my lap, that is my cue to start my devotion. I wish I could tell you that I am deep and I read and pray for hours but I would be one lying woman. But I do use the devotional I have told you about and having the time to let my mind and heart tell me what to pray about takes the pressure to get it all done so I can move on to the next thing. Because there is no next thing in my life. Weave all that in to my son whom I have written about a couple of times before. He has just graduated from emergency medical services training and is working as a paramedic in NC. Many of you will know that he and I have climbed many a figurative mountain over his 24 years. Literally some days I didn't think we would both make it out alive but God is good, as are the friends who camped around me and held me up during those difficult years. He made it out of school as you know and has been working since June. This young man has a deep, strong faith as I have written about before. His preschool teacher called him her "little philosopher." He has always been a deep thinker and someone who had to know the practical applicability of each and every assignment he ever had. Oh my. To summarize his last five months of employment, he is in my opinion being hazed as the new kid. And if you are a nurse you know exactly what I mean. They have given him a lot of hassle for what purpose I do not know. I realize he is my son and I am ready and willing to take anyone down who would try to hurt him after all God and I have done to get him this far but I do believe he has routinely been treated unfairly at this organization and his daily texts for help, prayer and guidance have stood witness. He has been called in a couple of times with his partner for not getting along. So yesterday I began getting frantic texts about his work again. I didn't understand the EMS world to know that you have a partner (I guess like police?) and that is your partner everyday, all day inside an ambulance. Pretty tight quarters. I don't know of anyone I would want to be trapped inside with in a vehicle 40+ hours a week. So, they have been pulled into the supervisor's office several times to no avail and I have continued to worry that at some point, this very different thinking man would stand up and say, "Enough. I quit." Something  happened yesterday and he and his partner were being brought in for yet another meeting. So I began praying yesterday like never before. I felt deeply that this time he was going to be fired. I must admit I was mentally exhausted from praying and wondering all day long. I prayed that the supervisor's mouth would shut as if duct tape had closed it. Yes. I prayed those exact words as he told me the meetings are loud, chaotic and he can't get a word in to defend himself no matter how hard he tries. I prayed that he would not act impulsively, that he would become calm. I prayed that angels would come and surround the room and this meeting would be different and he would be heard. Time ticked by ever so slowly but at 5:30pm he called. "I have to tell you what happened." I sat down and prepared myself for the worst, quite frankly. "The meeting started out as loud and chaotic as ever. And I just sat there. But then at one point,  she shut her mouth and stopped talking! I used that moment to start talking and I ended up being able to take control of the meeting and talked for about twenty minutes." "My tongue unfurled and I was able to disassemble every false accusation against me. No one talked. They, for once listened. I could feel my heart rate slow down, my blood  pressure go down and I was in control. Finally the supervisor asked me how she could rectify the situation." I  was floored! She had imaginary duct tape across her mouth! I told him that I had prayed that she would stop talking. That blew him away. I told him I had prayed over the room and the situation and it floored him. He said, "Mom. Can we pray right now to thank God for answering our prayers?" We did. Afterward, he said he was starving. He is always starving. I could hear him sniffling a little. What a stressful day. The new kid on the block and all. But God bless him, he did a great job. I sat there on the couch after our conversation and thanked God again for sparing my child and for giving him a voice. It seems the invisible duct tape worked!  ]]>     3733 0 0 0 1442 http://www.riverbirchvineyards.com 0 0 1443 0 0 1444 https://www.mylifeline.org/StephanieSugars/updates 0 0 1456 0 0     Further Down the Path With Hospice http://www.sherrifillipo.com/2015/11/13/further-down-the-path-with-hospice/ Fri, 13 Nov 2015 17:02:43 +0000 http://www.sherrifillipo.com/?p=3741 Medicine

    I know many of you have been watching me tiptoe down the path with Hospice to see how it all works. I am just as naïve as most of you say you are about this organization and I continue to learn and admire their philosophy on patient care. Well, last night I stepped further down the hospice pathway than I had anticipated doing,  but all is well. Let me back up. I awoke with a headache yesterday and if you have Stage IV breast cancer, your mind goes immediately to brain mets, am I right? After I had convinced myself that all I had was a tenacious headache, I did all the usual things: I had coffee in case it was a caffeine headache, I forced fluids in case it was dehydration and I downed some Advil and waited for the combo to take effect. Well, it didn't. I pushed through the day and by nightfall, I continued to have a pretty impressive headache, at least by my standards. I took my evening meds which would knock out most elephants and I thought, "This ought to do it." But the longer I sat, the more I hurt and it was decided that I get the morphine out. What? I don't remember if I wrote about this but Hospice wants both (oral) morphine and Ativan to be in the home right up front so as the disease progresses and you look up one day and need it, no one is scrambling around trying to get a prescription. I am all about pain relief and am not hesitant to take anything at any time. But I will confess, I sat there and discussed it remarking, "Is this crazy? Am I really getting ready to do this?" It was as if once I started something, it would be a slippery slope. It's all nonsense but at 11:00 at night after a long day, you question things. But I took the prescribed amount, which if truth be told, it is a tiny amount. And waited.  30 minutes later, my headache vanished and I slept soundly most of the night. This morning, guess what woke up with me? The headache was back. I did the same things: coffee, water, advil and then called the triage nurse at Hospice. This is another benefit. We discussed what I had done yesterday and today; she suggested I go ahead and take another dose after we hung up. She was supportive. She understood my hesitancy and our conversation allowed me to do what I thought I needed to do and was nice to have a nurse's words of affirmation. Again, I am sold on the benefits of hospice.]]>     3741 0 0 0 1446 https://www.mylifeline.org/StephanieSugars/updates 0 0 1447 1446 1 1448 0 0 1445 0 0 1449 0 0 1450 http://maesday.wordpress.com/ 0 0 1451 0 0 1452 0 0 1453 0 0 1455 0 0     Headache Gone http://www.sherrifillipo.com/2015/11/16/3747/ Mon, 16 Nov 2015 15:15:46 +0000 http://www.sherrifillipo.com/?p=3747 US stamp circa 1999 US stamp circa 1999[/caption] After talking with the triage nurse at Hospice on Friday about my stubborn headache, my regularly scheduled visit was later that afternoon. I continue to be impressed with how patient-focused they are. I felt as if the nurse had all the time in the world to discuss my current issue; I was comfortable being in my home to talk. For me, it was just right. She has at her disposal both a hospice physician and hospice pharmacist to use as consultation at any time. After we had exhausted our ideas on what to do next, we put a call in to each. Because three days prior, I had seen flashing lights in my head and then the headaches started up the next day, the MD suggested I take a round of steroids. Of course that rankled me as I am still so vain that adding moon face to my list of concerns made me go momentarily insane. I continue to learn so much about Hospice. On Friday, I learned that now that I am under Hospice insurance, they only prescribe medication in ten day increments. Beloved had to walk me through that. (The average length of stay in Hospice is 14 days.) And when I went to pay for the steroids, there was no cost. I ended up taking my first dose of steroids Friday night and by Saturday, my four day headache was gone. I know it takes a couple of days for the meds to kick in. So I can't give the the credit but I didn't care. The headache had dissipated and I put away the meds; after all, Hospice continues to remind me we are only treating symptoms, and my symptoms (for now) have vanished.]]> 3747 0 0 0 1457 0 0 1458 0 0 1459 0 0 1460 http://www.mylifeline.org/stephaniesugars 0 0 My Pastor From Long Ago http://www.sherrifillipo.com/2015/11/17/my-pastor-from-long-ago/ Tue, 17 Nov 2015 17:24:49 +0000 http://www.sherrifillipo.com/?p=3752 Cross under the water

    It's funny how things pop into your head seemingly out of nowhere. That happened to me a week or so ago when it dawned on me that my former minister in NC  moved several years ago and has started a new church in the city in which Mom and Dad now live. My family continues to toy with the idea of me coming to NC toward "the end" so that I can be near family and friends when I die. Not that I don't friends here in my beloved adopted home of Corning, but you have no idea how many cousins I have throughout the state. So, I reached out to my former minister who I have not talked to in many years. Of course he was surprised about my diagnosis but said he would considerate it a privilege to walk with my family through this process. Several emails later, I told him he could back out of this project and all of its unpleasantness but his response was that he thought it would be oddly pleasant and he would love to do this for me and my family. So, I didn't see that coming - I mean someone from my long ago past coming into this picture but I am happy that he is willing to. Though he doesn't know my parents nor Beloved, he does know my son and for that I am thankful. And oddly enough he and his wife live only 10 minutes away from Mom and Dad. I am finding out that if I am patient, God is working behind the scenes to make the details line up. If I will only let Him.]]>     3752 0 0 0 1461 0 0 1472 0 0     Phone Call With My Minister http://www.sherrifillipo.com/2015/11/18/phone-call-with-my-minister/ Wed, 18 Nov 2015 15:00:51 +0000 http://www.sherrifillipo.com/?p=3757 Silhouette of a cross against evening sun

    The minister that I wrote about yesterday and I  had a phone conversation today, our first in many, many years. We had some catching up to do. When we got around to the matters at hand, he blurted out, "I love a good funeral!" Don't misinterpret him as I thought it was hilarious. And I knew exactly what he meant. I have been to many funerals where I knew the person they were espousing was not nearly as angelic as the minister was painting him out to be. I have also been witness at funerals where I knew for a fact (and yes I know that only God knows a man's heart) that the person was not a believer and if so, he had a funny way of showing it. I have often wondered how clergy get through these times when they either don't know the person well, have been asked to officiate for a person they have never met or have been asked to lead a service that might not reflect the person being buried. But this minister  gets it. And we talked about just these things. I also told him about the funeral I had attended on my birthday (my cousin's) that was just the type of service that my minister would have "enjoyed." Friends stood up to speak, the church was packed, the music chosen by my cousin and then afterward you may recall that I wrote about going back to another cousin's home for post-funeral dinner and get together. Which ended up including guitar playing, sitting by the bay, doing a little dancing, and howling at the moon (family tradition) before calling it a night. We all still miss Gary immeasurably but those surviving cousins celebrated his life that night with wild abandon. That's what I want. Since we had not talked in a long time, I explained that my parents were in a new home, there was room for me and whoever wanted to spend the night(s) with us toward the end. As my mother announced one afternoon, "I think this would be a lovely place to sit, and reflect..." but she did not finish the sentence. She meant, a lovely, peaceful place in which to die as well. I am still negotiating whether she would let me have the short service there on her property. I warned him about Momma Jane and he laughed. He has never met her but he is ready. We decided we would touch base every few weeks until at some point, I travel south - whether that's in six weeks, or six months or six years. We have our game plan. Check that item off the list!  ]]>     3757 0 0 0 1462 0 0 1463 0 0     Robin Williams and Terminal Diseases http://www.sherrifillipo.com/2015/11/19/robin-williams-and-terminal-diseases/ Thu, 19 Nov 2015 15:12:54 +0000 http://www.sherrifillipo.com/?p=3764 robin williams

    I don't know about you but when I heard that Robin Williams had committed suicide last year, my heart ached for him and his family. Probably like you, I had been a long time fan. From the day he landed on earth from 'Ork' I was hooked. I too, agreed with those in Hollywood who thought he was a bright shining star, maybe a shooting star who might not last a long time but would be brilliant while he was here. You know the party game, "If you could have dinner with anyone living or dead, who would it be?" For years, I had said Steve Martin but after Williams died, I changed it to him. Why? Because I wanted to tell him a few things about those of us who are living with a terminal disease. I wanted him to know he could do it. I know it took a year for the details to appear in the news but apparently he had a degenerative condition and had been given about three years to live. Does this sound familiar to anyone out there? I wanted to sit down with him and tell him that he could be brave like my friends and rise to the occasion of his disease. They say he was most concerned about his mental status diminishing. I would tell him all about chemo brain and how I no longer remember huge portions of conversations Beloved and I have had. He was no longer going to be able to swing from the chandeliers. Well, neither can I. I wanted to tell him, "You can reinvent yourself. You can learn to find joy in other things. Don't leave your family because your role is now changing." I wanted to tell him the dozens and dozens of women and men who are facing life with courage and humor in the midst of a terminal disease. And are learning to thrive despite the disease's ravages. I wouldn't scold him but I would remind him of what appeared to be a deep love and devotion of his wife and his three children. I would tell him they can be your biggest allies and your best supporters. I wanted to tell him, "Don't let this disease drag you down." Unlike us unfamous people, the world is behind you and many are praying for you. It breaks my heart that he bowed out so soon and so suddenly. We will continue to be brave and march on.]]>     3764 0 0 0 1464 0 0 1465 http://Mrsbobleck@aol.com 0 0 1466 1464 1 1467 1465 1 1468 0 0 1469 0 0     Sweet Jack http://www.sherrifillipo.com/2015/11/20/sweet-jack/ Fri, 20 Nov 2015 18:00:36 +0000 http://www.sherrifillipo.com/?p=3769 image

    The handsome fellow that you see above is Jack, the family's beloved yellow lab who died last Saturday at the age of 13. We got him as a young adult, sort of a rescued dog. Though for my protection, every time he saw me, he urinated no matter where he and I were. When I would come through the back yard, he would run and hide behind a tree or bush.  It didn't take long to understand that his abuser had been female. He finally got used to me and other females and was a dear part of my son's life. But on Saturday it ended fairly quickly. And for that I am thankful. But you know where that led my thinking. Do animals go to heaven? As a little girl, I remember asking Momma Jane if I would have a bicycle in heaven. And her response was, "Whatever you need in heaven, God will see that you have it." I remember being pleased with that answer and happily pedaled away on my bike. Biblical scholars say the Bible is silent on many topics, this being one. But I liked the author who said, "When you envision heaven, do you not see birds in the branches and butterflies drifting through lovely gardens?" That is not supposed to be a spiritual argument for animals being there, but he also says God gave us animals and pets. He knows how much we love them. I think for now I will rest in Momma Jane's wisdom of if I need it, I will have it no matter what it is. See you in a bit, Jack.          ]]>     3769 0 0 0 1470 0 0 1471 0 0 1476 0 0     An Old Testament Queen and a New Testament Blogger http://www.sherrifillipo.com/2015/11/23/an-old-testament-queen-and-a-new-testament-blogger/ Mon, 23 Nov 2015 14:33:49 +0000 http://www.sherrifillipo.com/?p=3774 image

    When I started blogging  a little more than a year ago, if you have been with me this entire time, you know it was a therapist who suggested it after I had gone to her to get a grip on why I was crying so much about a colleague who had unexpectedly died at the hospital in which we worked. Our conversation morphed in to my diagnosis and the sudden screeching halt of my career. As I was walking out that day, she said, "Start a blog." When I tell you I didn't know what one was, I really didn't. I knew it was a shortened for "web log" but I was not on any social media except LinkedIn and I certainly didn't need that professional networking site now that I was disabled/retired. I cannot remember how or when after we had talked that I started exploring blogging. It is such a strange word. It sounds like blob. I wasn't all that endeared to it but I continued to research. The next thing I knew I had hired a designer and within a few months I had what you see now - a no frills blog. I remember my first entry. I wasn't sure what to write. I certainly had no readers but off I went. I had to ask my hair stylist how often one 'blogs' as I wasn't sure of anything I was doing. And for some reason I settled on once a day but not on weekends. I knew I wanted to share my personal experience with whoever was going to read it  (and I was still not sure how all of that was going to work) and I wanted to dispel a lot of misinformation out there about breast cancer. But if you had told me I would also be writing about my mother and her antics and using this forum to share my spiritual journey as well, I wouldn't have believed it. So today. I  read a devotional called "She Reads the Truth." It is an online community of women who read short series together. There is the scripture and then alongside it, commentary that helps illuminate the scripture, often by adding practical applicability. Last week I was trying to explain to someone why I write. Why I am so deeply connected to this blog. It feels as if I am propelled to do it. I explained although my career is over, I have never felt more fully that I am exactly where God wants me to be - in front of this computer staring out at the mountains behind it. And then this morning's devotion. I am reading a seven day devotion on the book of Esther. My favorite book of the Bible. And I got to the verse that states: Who can say but God has brought you into the palace for just a time as this? Esther 4:14 Another translation reads: Perhaps you were born for such a time as this. And it was made perfectly clear. I am doing what God wants me doing. I just could not have dreamed it a year ago. Like  Queen Esther, I feel deeply satisfied and squarely where I am supposed to be - writing for however long He wants me here writing.  ]]>     3774 0 0 0 1477 0 0 1478 0 0 1479 0 0 1480 1479 0 1483 http://leatherandlacemc.com 0 0 1485 0 0 1486 0 0 1488 1483 1 1489 1485 1 1490 1486 1 1498 1483 0 1502 1498 1     Thanksgiving 2015 http://www.sherrifillipo.com/2015/11/24/thanksgiving-2015/ Tue, 24 Nov 2015 18:27:23 +0000 http://www.sherrifillipo.com/?p=3783 Autumn decorations

    Tomorrow marks my third year anniversary of being diagnosed with terminal breast cancer. It was three years ago tomorrow that a dear surgeon whom I did not know added a few hours to his day and drove from an outpatient facility back to the main hospital to put my port in. Instead of going home in the early afternoon like his schedule said, he came back and took care of me that night. I will never forget that. I thanked him and thanked him until he told me if I said it one more time, he was going to slap me and that would not be good for either of us! I adore a man with a sense of humor. Based on my liver scans, my oncologist wanted me to start chemo that day. I pushed back and told her I wanted to have Thanksgiving dinner with my family and that the next week we would be back to business - I needed everything to just be held in suspension for a few days. How much difference could four days or so make anyway? Fast forward to today. I think knowing that three years have flown by and tomorrow marks THE anniversary date, I have been a bit blue. Basically sitting here in disbelief that time could go by that quickly. As most of you know, though Susan Komen and her foundation have been working at this for years, the median prognosis of survival after metastatic diagnosis has been given (not to be confused with the primary diagnosis) is three years. If you know me at all, you know that I believe my days have been preordained before I was born and if you know me you also know I am a realist and a believer in science as well. The statistics haven't changed in decades. No, as far as I know I am not dropping dead tomorrow but when you reach certain landmarks and for those of us with cancer, those landmarks are different than yours - you become more reflective. And I guess that is what is happening to me today, this week. We are headed to Philly for Thanksgiving and though I LOVE my family there immeasurably -  it is going to be difficult. My sister-in-law cooks for 20+ people. She places table next to table, next to table so we can all squeeze together in one room. My brother-in-law always says a prayer along with a year in review for everything our family should be thankful for. And for the last two years, heads turn toward me and I want to cry but I have held it together so far. I am giving fair warning to my family that this year, I won't be able to hold it back. No need to pass the salt to me this Thanksgiving. My plate will salty enough after his prayer.]]>     3783 0 0 0 1510 0 0 1491 0 0 1492 0 0 1493 0 0 1494 1492 0 1495 1493 0 1496 http://gravatar.com/runner0896 0 0 1497 0 0     Beets and Bulldozers http://www.sherrifillipo.com/2015/11/25/beets-and-bulldozers/ Wed, 25 Nov 2015 19:40:37 +0000 http://www.sherrifillipo.com/?p=3799 beets with leaves on the boards

    Momma Jane just called to tell me about her wonderful date night last night. She and Dad went to a "farm to table" restaurant and Mom just raved about it. When I asked her what she had, she told me a beet salad. That was it. Just a beet salad. Ugh! I told her I couldn't imagine walking into a restaurant and actually ordering it when there would be so many other choices! But she loves a good beet salad and orders them every time she sees one on the menu. She said it was so beautiful with arugula on top and toasted cashews....I just didn't know what to say after that. Although I pride myself on a pretty broad palate, I would eat chalk before a beet.  Anyway... We then started talking about Hospice coming today and about my various aches and pains. We discussed how I am now feeling pressure up under my rib cage  and how uncomfortable it makes me. I told her it reminded me of being in my body cast (you can read about that here) back when I couldn't ever feel like I could get a good breath due to the plaster encasing me. We talked back and forth. I told her I guess I am good at soldiering on through things. Then she popped up and said, "Yes, the world is full of butterflies and bulldozers." When I told her I didn't believe I was either one, she corrected me quickly, "Oh, my dear you have always been a bulldozer!" I felt my blood pressure starting to climb and here I was talking to her  right before Hospice was coming to take it.  I told her in no uncertain terms I was NOT a bulldozer. "But you are. That is not a bad thing." "Mother, when have you ever heard of the word 'bulldozer' used as a compliment?" "Well, it means you get things done. You move mountains. You know...that kind of thing." Hmmm. "Well, what would you call it?" "I prefer to call it 'finesse.' Doesn't that sound like a better word to you?" "Well, I guess." "Mom, today while you are out doing your errands,  do me a favor and ask a random sampling of people if they consider being called a bulldozer an endearing word to use on a loved one." She laughed and told me she couldn't talk to me any further. She was in Sherwin William's paint store looking for the correct shade of taupe for the walls.]]>     3799 0 0 0 1506 0 0 1499 http://cancerqueen.me 0 0 1500 http://cancerqueen.me 0 0 1501 1499 1 1503 https://www.mylifeline.org/StephanieSugars/updates 0 0 1511 0 0     Happy Thanksgiving, Tears and All http://www.sherrifillipo.com/2015/11/26/happy-thanksgiving-tears-and-all/ Thu, 26 Nov 2015 13:03:00 +0000 http://www.sherrifillipo.com/?p=3804 Autumn frame

    I heard from a lot of you about the tears I am preparing to let drop and fall into my plate later today in Philly. My dear sweet aunt left a lengthy message telling me it was ok to cry and many others of you as well. This morning I was again reading the devotion on Esther and if you recall, when the king spares her cousin Mordecai's life, she bows down and weeps without shame. The devotion quoted a writer, Emily Freeman about listening to your tears:
    Tears are tiny messengers sent from the deepest part of who we are. They whisper - here is where your heart beats strong...
    I cannot argue with that. So we are off to Philly. And I am wishing you all a very Happy Thanksgiving.]]>     3804 0 0 0 1505 1504 1 1507 0 0 1508 http://mstakesme.wordpress.com 0 0 1509 0 0 1504 0 0 1512 0 0 1514 https://plus.google.com/106368806045752616202 0 0     Thanksgiving, Tears and All http://www.sherrifillipo.com/2015/11/27/thanksgiving-tears-and-all/ Fri, 27 Nov 2015 14:45:46 +0000 http://www.sherrifillipo.com/?p=3809 image We were the last to arrive which is so not like us and I will admit I was ready to flood the floor with tears. I could tell some, if not all, of the family had read the blog...Ted started out with his year in review in the kitchen which was unusual but it allowed me to hide back behind my other brother-in-law nicely. We have had several college graduations in the past year and he was outlining those among other things. Then "my little messengers" started to bubble up from my depths and I began to weep. Not sniffle but weep. Ted looked over and kept talking. He reminded us we all have our mission in life, to do what God has set before us. He prayed, I wiped my nose and we all sat down to dinner. My sister-in-law once again outdid herself. It was a loud happy band of family. Just the way it should be....later we all went back to the kitchen for the unveiling of about five different pies. And then Ted asked me if I wanted to follow up with anything and I felt the urge. So pre-pie cutting, I told them all how much they meant to me. What joy they have given me through the years. How restorative being a part of their family has been for my soul. More tears shed. Hugs all around and then while Cheryl cut pies, the kids danced the merengue in the midst of sharp knives and pumpkin pie. I had the time of my life.]]> 3809 0 0 0 1515 0 0 1516 0 0 1517 0 0 1518 0 0 1519 0 0 1521 0 0 Loss of Appetite in Cancer Patients: Part II http://www.sherrifillipo.com/2015/12/01/loss-of-appetite-in-cancer-patients-part-ii/ Tue, 01 Dec 2015 15:30:14 +0000 http://www.sherrifillipo.com/?p=3815 carrots

    From blogger Ann Silberman at butdoctorihatepink.com  Part I was yesterday. Part II follows here:   So, your loved one has advanced cancer, is not eating, and you want to help. First, please read part one. You must understand that what you think is a loss of appetite is more than that - it's a true physical inability to eat. It's a symptom and a complication of disease and not something we control with willpower. No matter how much you beg and cajole, eating regular, normal meals is a medical impossibility and will only cause more stress. You might as well be begging somebody with a broken femur to get up and run a marathon. I also want to make clear that I am not talking about the common loss of appetite that happens in an early stage cancer patient due to chemo, surgery, or as a medication side effect. Depression and some medications can also cause a lack of appetite in early stage cancer patients, and so appropriate diagnosis and medications may help. Any lack of appetite should be discussed with a doctor. I am talking about something very different. I am talking about what happens to an end-stage, terminal cancer patient - anorexia-cachexia. This is a wasting condition where muscle is lost, metabolism is revved up yet food desire disappears, and it happens because of their disease, not because of treatment. Those who have cancer anorexia-cachexia experience it even when we are off treatment. Mine started before I started the new chemo, when the cancer (unbeknownst to me) began spreading again but when I was on the same therapy I'd been on for 2 years. So what can you, as a caretaker, do to help? I will tell you what has worked for my home, and you can adapt this for yourself. Communication: Don't ask the patient to make food decisions. I do not want to be asked what I feel like eating, because the answer is nothing. My husband used to say "What do you want for breakfast?" or "Do you want eggs or pancakes?" "Do you want soup for dinner?" I truly cannot answer that question because I don't want anything. And not only do I not want it - it makes me angry to think about. Angry, frustrated, annoyed....You might as well ask me, "Do you want to be stabbed in the lung or the liver?" Neither! I truly cannot make food decisions at this point. I told my husband that he is not allowed to talk to me about food. Bring me food or don't, cook or don't, but leave me out of it. I won't acknowledge that question and he has stopped. All decisions about food are his. I think I eat a tiny bit more since he stopped asking me and just started giving it to me. Shop: Put yourself in the role of decision maker. For husbands, or at least for mine, this may be something they aren't used to. I shopped and I cooked. Now I am beyond shopping for food. I used to go to Whole Foods and buy all the things I'd love in the hopes I could eat, yet it would rot in the fridge. Now, I don't even want to see it, my stomach roils just thinking about food. So, take it upon yourself to shop for your loved one. Try to keep the things you know she'll eat on hand, and keep the things you hope she'll eat around too. Don't worry so much about nutrition as much as intake. If all I can eat is cake or 3 musketeers mini-bars, well, make sure I have cake or candy in the house. Don't substitute what you believe is healthy - it's not going to be healthy if we can't tolerate eating it. Take Control of Food for your Loved One: Bring foods every few hours. While I won't make a food decision, I also don't want to be on my own with food intake because frankly, I wouldn't eat. At all. I know mentally I have to eat but cannot tolerate the thought or the pain that comes later, and most food sounds disgusting now - so I need help. Despite the fact that everything but candy sounds awful, if something is put in front of me at dinner, I sometimes eat it. I have no appetite and won't ask for it, but if a cup of hot soup, or a cup of tea and cookie is placed in front of me on a cold day, I might sip it. Maybe just a sip ... but it's something. If a tiny plate of fruit and cheese is placed in front of me at lunch, I might nibble at it. (Tiny being a few grapes and a tablespoon of cheese). I certainly won't get it myself and if you ask me if I want it, the answer is an unequivocal no. If it magically appears without questions or expectations, maybe I'd try. Maybe I wouldn't. But it is better than talking about it, which I am certain to not respond to. Size Counts. Food hurts, we don't want to see it. Don't put a big bowl or plate of anything in front of me. It hurts to even look at it. Keep it small. Light and airy. I don't know why looking at a big plate of food bothers me but it does. Notice taste changes. Cachexia can cause things to taste weird. Keep our new likes in mind. If I can't stand garlic anymore, don't put it in anything we share, even if you like it and even if you know I used to love it. Now, it's different. I can no longer tolerate onions, garlic, or any kind of intense flavor but used to put them in everything. I still like salty food. I like popcorn with no butter. And sugar is something I never cared about but now like. Taste changes can make things we enjoyed formerly undesirable. So pay attention and make sure those things we now like are on hand. Choices: Provide tasty foods. My husband is a truly terrible cook. (Sorry hon.) I finally tried a food subscription service, where meals are delivered with recipes. It's expensive and I hate that I have to pay for that with a kid in college - but that said, I eat a bit of it. There are several of these services. They give you choices of meals weekly and deliver them to your home. The right amounts are sent with recipes, and my husband just has to put the meals together. They are creative and flavorful, and I like them. That doesn't mean I can eat a full meal, but when I taste something that is good, I can usually eat a few bites. When it was him cooking on his own, I had no incentive at all to eat. Taste still counts, even if we like fewer and fewer things. Diet: The time to worry about nutrition is over. Nutrition is important when you are an early stage cancer patient regaining your health. Everyone should eat well. But when we are this sick, and hardly able to eat, getting calories in is more important than a balanced diet. My oncologist says any calorie is a good one. Your ideas about perfect nutrition have to go out the window at this late stage. That doesn't mean you shouldn't give a cancer patient nutritious foods, but only if they will eat it. Give little balanced nutritious meals through the day and see what the patient eats. If it's pretzels and grapes, that is better than nothing. Nagging: Don't. We know. We really do. If you get the urge to nag, do something instead. Put small amounts of food in front of a cancer patient without asking a couple times a day - and take it away whether it's eaten or not, and say nothing. Ignore your feelings of upset, time/money wasted or rejection if it isn't eaten. What's the ultimate goal? Your feelings, or helping a cancer patient with a symptom? Know you tried. You showed your love. It's better than nagging. If you want to help, this is what help looks like. If you don't, that is fine, understandable really - nobody really wants to be responsible for another adult's food intake. Just don't put it back on us, which is what nagging does. Remember, you can't force us to eat. You can't talk us into it. All you can do is tempt us and make it easier. If we can't do it, you did your best. Not only did you try to help us, you did it leaving our dignity intact. You can remember that with pride. Understanding. Truly learn this isn't within our control. Imagine, if you were forced to eat something disgusting and got punched in the stomach with every bite which then caused hours of pain - eventually you wouldn't want to eat either, even if you had an appetite. When you have no desire for food and a food revulsion, when your body doesn't want food any more and with each bite there is real pain - it doesn't take long to learn to stop. Try to understand how hard it is for us. Try to understand that it is out of our control, and that it is our bodies doing this and not our minds. Bottom line: If one of the symptoms of having a disease is a runny nose, hand us a tissue, don't try to convince us to make our nose stop running. Do remember, it's nobody's fault. You can't talk us out of pain, you can only bring us a pill. You can't make us not tired, you can only let us rest. You also can't make us able to eat, you can only provide foods and leave the rest to us. We want comfort, love and acceptance, especially at the end, not fights about food.]]>     3815 0 0 0 1541 1529 1 1529 https://www.mylifeline.org/StephanieSugars/updates 0 0     Loss of Appetite in Cancer Patients: Part I http://www.sherrifillipo.com/2015/11/30/loss-of-appetite-in-cancer-patients-part-1/ Mon, 30 Nov 2015 15:18:29 +0000 http://www.sherrifillipo.com/?p=3816 Complex Carbohydrates Food Sources

    This post comes from a woman named Ann Silberman who blogs at butdoctorihatepink.com I have been struggling with my appetite or lack thereof and was reading this last night. It is written in two parts. I hope you find it as helpful as I did:   Loss of Appetite in Cancer Patients - Part One In some people, cancer causes "loss of appetite." Only it's not really a mere loss of appetite; there is no good medical description for what really happens. I know because I'm experiencing it. From a site about this topic: "..the inability to eat and the associated weight loss often causes conflicts within relationships. In fact, nutrition and nutritional status have a central position in the concept of health and wellbeing for many patients and care givers, and weight loss and inadequate nutritional intake can lead to anxiety and a feeling of hopelessness. Available data suggest that patients and their families view poor appetite as the most distressing symptom they encounter during cancer treatment." And what happens is that family members, not knowing what else to do, nag us to eat. Cancer patients aren't alone in this "loss of appetite." Liver disease, HIV, heart failure, kidney disease and others can cause it, either temporarily or permanently. But since I write about cancer, I have to say that it is very common in people with advanced cancer, especially those of us who have it in our GI area. No, not everybody has it, but plenty do. There is a formal name for this: "anorexia-cachexia syndrome." It's why you picture a dying cancer patient as wraith-like; like Steve Jobs. Let's just say that at a certain point in the disease, most of us are not really worried about keeping our figures. I know that it is very disturbing for family to watch their loved one wither away, especially when you think that it's because they don't eat. You are puzzled when they turn down food or only eat a few bites and won't can't do anymore. You may even get angry. "Don't you know you have to eat?" you say, exasperated. You may believe that they are being ornery, or don't realize how little their food intake is, or are just not hungry and should eat anyway. "If they will just eat," you think "maybe they could get better." So you nag. You believe that it is within the sick person's control - mind over matter. Force it down. Just eat, dammit! I understand this thinking all too well. My mother died of cirrhosis of the liver and she barely ate for the last years of her life. She was about 70 pounds at her death, and she was normally in the 130s. Naturally, this caused incredible distress for my father. My parents were never big eaters, but after they retired and moved to Nevada, they did enjoy going out to lunch every day and eating a sandwich or steak. They rotated restaurants; my dad, the big flirt, always chatting up the waitresses. At some point, my mother stopped ordering food. (Although not wine.) Because it was their only meal of the day, she began losing weight. And more weight. At that time, she didn't have a diagnosis of anything wrong, so nobody understood what was happening or why. In frustration, my Dad asked me to come and cook for them, thinking home-cooked meals might tempt her. Being a dutiful daughter, I took a week off work (this was ironically just a couple weeks before I was diagnosed with cancer.) I spent time cooking all of my mother's favorite meals, freezing leftovers so at least my Dad would have something to eat. I knew it would do no good for my mother - but I, too, believed it was because she was stubborn. I thought she lost her appetite because of her drinking but could eat if she wanted to. Knowing she wouldn't listen to her daughter, I didn't spend any time trying to talk her into it. But my dad was hopeful my cooking would help, and during her afternoon naps, he would tell me about his worry. The rest of my family spent time literally begging her to eat. He and the rest of the family told her how much her body needed food, encouraged her to "take one bite," and all the rest of the things she, as a smart woman, already knew. Her only response to these many entreaties was to shrug, light a cigarette and pour a scotch. Now we know she was sick from end-stage liver disease. And now, sick from end-stage cancer, I see the other side of this food story. The only difference for me is I don't get any calories from alcohol. My mother didn't have the capability of explaining what was going on with her - but I do. And not only do family members need to hear it, medical professionals do too. First, you must understand that while they call it is a "loss of appetite," it is much bigger than that. You may be able to eat when you aren't hungry - we can't. This problem of being unable to eat is not a matter of will-power, nor is it in our control. It is a symptom, a complication of our disease, same as a runny nose caused by a cold. Pleading with us to eat is like begging somebody with a cold to stop their nose from running. The patient wants it to stop too - but it cannot happen, they have no control. They aren't being stubborn or willful because they cannot command their body to stop making mucus. They literally, physically, cannot. This is the same thing. While the reasons for this syndrome are not well-understood, scientists do know that it is a metabolic problem. There is even a name for it - cancer anorexia cachexia. I'm not going to be able to explain this well, but you can search for it if interested. Very simply, tumors release destructive proteins which tell cells to produce an inflammatory reaction which can cause a loss of appetite.These proteins can also cause muscle atrophy and can be the cause of altered taste changes, among many other problems. It's a whole metabolic cascade response caused by end-stage cancer: "..anorexia describes loss of appetite and/or an aversion to food. The term “cachexia” refers to a loss of body mass, including lean body mass and fat, in the setting of a disease state, in this case cancer. - See more at: http://www.cancernetwork.com/cancer-management/anorexia-and-cachexia#sthash.Hw0aa190.dpuf " "Cancer cachexia is a multifactorial syndrome defined by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment”. [Fearon, Lancet Oncol 2011]" It is physical, and it isn't a problem somebody can mentally talk themselves out of. Not even me. I do have a loss of appetite although that phrase does not encompass all that I experience. Appetite isn't the same as hunger. I wouldn't say I never feel hungry because there are times when I am hungry, although not the way I used to be. People think I should smoke weed, or get some prescription drug that will increase my appetite, but being hungry is really not the problem; it's what happens after I'm hungry that is the problem. Eating is the problem. I have no desire for food, even if I get hungry. In fact, food is repulsive to me. Just the idea of eating makes me uncomfortable. I used to be a foodie, and cooking was a hobby. I enjoyed watching TV shows about food and trying new recipes. My husband and I thought when we were retired we'd eat out regularly, trying new restaurants, travelling to places like Chez Panisse. My town has a good food scene. I used to know when restaurants opened, and I intended to sample it all. Now, food is revolting. Even when I do feel hungry, the idea of eating grosses me out. As my husband shared, he does the cooking now, and he frequently asks me what I want to eat, because of course, he wants me to like what he cooks. But the answer is nothing! I don't want to eat, it is unpleasant to even think about it. Angering even. Food is no longer desirable. It's an intense annoyance. The things I used to like don't taste good to me anymore, and not only that, the texture seems weird. I used to love eggs - I could eat eggs every day. Loved them fried, scrambled, poached, hard/soft boiled, on salads and pasta, you name it. Now they taste sour. And the texture is nasty. A scrambled egg seems to have a gritty texture, like it's filled with sand. An egg over-easy, the way I loved them, is like oil. I can't even remember what I liked about them. Anything creamy seems oily to me which is why I can't tolerate those Boost type drinks. I physically react to food that I no longer like - just a few swallows and my throat closes and I wretch from disgust. Giving me food is like putting a plate of crickets in front of me and expecting me to eat it. I think of the crunchy legs in my teeth and shiver. Just....no.]]>     3816 0 0 0 1524 0 0 1525 0 0 1526 0 0 1528 0 0 1531 1528 1     A Legacy Video http://www.sherrifillipo.com/2015/12/02/a-legacy-video/ Wed, 02 Dec 2015 16:24:45 +0000 http://www.sherrifillipo.com/?p=3821 hearts two

    Yesterday I accomplished something that I both looked forward to and dreaded at the same time. In fact I had canceled it twice. Hospice provides many services as I have written here in the past. And another one I took advantage of yesterday was making a video to leave my son. I know I want to start crying right now about it. But nevertheless, it is a service for their patients and you can leave them for whomever you desire, your spouse, your children, your grandchildren. Hospice provides some conversation starters to use if you want them. I ended up not using them. Anyone surprised?

    You can choose to ramble like I did or you can have it done like an interview where they asked you pre-determined questions and you answer them. I knew it was going to be an deeply emotional event. It is the "final goodbye" and I will tell you for me it was one of the hardest things I have done. I started out by telling him how much I loved him - how deeply my heart is attached to his. I talked about some of the issues he has texted me over the last few weeks and reminded him of scripture that he needs to learn to cling to independently of me reminding him. I told him how proud I was of him to have gotten as far as he has gotten but reminded him that we walk by faith not be sight. And that he will need to remember that is the way God planned it. About the circumference of a flashlight's light but no further. If you could see life all the way to the end, who would need a Savior? It is trusting in what you cannot see and what you cannot not always understand that makes you stand apart from the others. I talked about still needing a mother long after I am gone and of the women, all my dear friends, he knows them all, who have agreed to step in for me when he needs to text someone or call someone with a question (and he lives with questions whirling in his mind morning, noon and night). Some have known him since birth, some since he was a young boy but I encouraged him to use them for answers to tough questions and also if he starts to lose his memory of me. They can help keep it fresh. I couldn't determine as I talked how much time I had used. I was painfully cognizant of trying to get everything in that I wanted to. And I am not sure I did. How could you? From here they will burn it on a CD and give it back to me. I am not sure how I will end up getting it to him. Maybe Beloved will do that for me at some point. I also can't decide if I will preview it or not. It was so emotionally draining. But so worth it. It sounds like I am discouraging anyone from doing it and I am not. I would just enter such a project after coming to terms that it will be emotional and it will be worth it for all time. And to keep a box of tissue handy.            ]]>     3821 0 0 0 1532 0 0 1533 0 1 1534 0 0 1535 0 0 1536 0 0 1537 0 0 1538 1536 1 1539 1535 1 1540 1534 1 1542 0 0     Gone From My Sight http://www.sherrifillipo.com/2015/12/03/gone-from-my-sight/ Thu, 03 Dec 2015 22:01:12 +0000 http://www.sherrifillipo.com/?p=3828 sailboat

    I am standing upon the seashore. A ship, at my side, spreads her white sails to the moving breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until, at length, she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

    Then, someone at my side says, "There, she is gone."

    Gone where?

    Gone from my sight. That is all. She is just as large in mast, hull and spar as she was when she left my side. And, she is just as able to bear her load of living freight to her destined port.

    Her diminished size is in me -- not in her.

    And, just at the moment when someone says, "There, she is gone," there are other eyes watching her coming, and other voices ready to take up the glad shout, "Here she comes!"

    And that is dying...

    ]]>     3828 0 0 0 1543 https://www.mylifeline.org/StephanieSugars/updates 0 0 1544 0 0 1545 1544 0 1546 0 0 1547 1543 1 1548 1546 1 1550 http://morethancancer.wordpress.com 0 0 1551 1550 1 1553 0 0 1554 0 0     The Holidays with Cancer http://www.sherrifillipo.com/2015/12/07/the-holidays-with-cancer/ Mon, 07 Dec 2015 17:51:50 +0000 http://www.sherrifillipo.com/?p=3838 Sea shell on sand

    As many of you know, we go to the OBX for XMAS. This will be our fourth trip down. I remember the first time. It was during chemo time and though tough, we had a great time. Fast forward to today and I am in a whole different place. While I want to go as it is a beautiful place to spend the holidays, I am finding as my disease progresses, so does my anxiety. Quite truthfully about everything.  I was never one much to fret but this whole cancer thing has taken more than my memory away - it has taken my ability to multi-task, I no longer have any logistical skills, my words don't come when I am  speaking (when you write, you can sit here for five minutes while the correct word works its way up from some dark netherworld in my brain).  This all wears on Beloved both because I know I have lost these skills but I keep lamenting about it to him. We are taking my two adorable, morbidly obese cats with us for the first time. Instead of being happy about that, I am fretting about how they will be on the trip, how I will be on the trip, my energy level through the holidays even though only my mother, father, son, sister and friend will be there. AND, my mother is bringing all the food. Do you see how dumb it is for me to fret? But I do. I am not a sharp tack like I used to be. I am a worn out old piece of string. So there. My pity party is over...for now. If you are feeling at all like I have been feeling, I have read through several oncology websites to see how they are addressing the topic of cancer and the holidays. The best advice, a compilation from many sources, is listed below. And yes, I need to take my own medicine, I know!
    • Take an inventory of the things that meant the most to you pre-cancer; decide what you can do or still want to do on that list and let the other things go; acknowledge that your life is different now and find peace with it as much as you can
    • Accept offers of help -  especially if they can take one of the items that you had crossed off the list from above as not being doable and let a friend or family member do it for you; people often want to help and don't know how
    • Be clear about how your are feeling; while everyone wants you around at all the functions, you will need to be upfront about what you can and cannot do; you may need a nap; you may need to excuse yourself early from an event; everyone will understand
    • Let people know that living with cancer is like having a roller coaster in your living room; some days you feel great, some days you can't brush your teeth; let family and friends know that each day is as much a surprise for you as it will be for them and then do what you can and do not ask for forgiveness for what you cannot
    • Food being central to so many celebrations can be a nightmare for people with cancer. You don't have to be on chemo to have a lack of appetite. Eat what you want. Leave what you don't want. Do not feel embarrassed about it. For those of you without cancer, please do not push food on the person with cancer; don't worry about what or if they are eating. There is nothing you can do to change their appetite. They wish is were that easy.
    • Take time to be around those that give you happiness. Limit time with those who don't understand what you are going through or who don't agree with the way your are handling your treatments etc.
    • A faithful reader just left a comment that is vitally important: if you have a cold, a drippy nose, cough etc., please do everyone a favor especially those of us who are immunocompromised and don't visit until you are better. The slightest cold that you can get over in a couple of days could really make us sick and sick for a long time.
    • While I am at it, get your flu shot! A lot of people don't realize that its purpose is twofold: to keep you healthy AND  to keep us with severe illnesses from getting any sicker or from dying
    This time of year, though magical in many ways, puts strain on even the healthiest people. It can be overwhelming for those of us dealing with cancer.  ]]>     3838 0 0 0 1555 http://None 0 0 1556 0 0 1557 1555 1 1558 1556 1 1559 0 0 1560 0 0     Sparkle http://www.sherrifillipo.com/2015/12/08/sparkle/ Tue, 08 Dec 2015 18:38:27 +0000 http://www.sherrifillipo.com/?p=3849 Bokeh abstract bright background

    On Saturday, Corning had an event known as "Sparkle" where they close off our one main street (they love any reason to shut that street down!) and the whole town, heck the whole surrounding mountain communities come down for the event. This was the 41st Sparkle. All of the stores are open; vendors come and sell all kinds of food from donuts to Indian curries - if you want it, you can find it. Our town is configured like the towns of old with a center square. There Santa had set up his shop (it is usually too cold to have kids sit on his lap outside) all of the trees that line either side of the street are lit - well they are lit year around which I love. In the square, Christmas music played and everyone was out for an evening stroll up and down our six blocks of town. It is magical for all kinds of reasons. Remember this is the place where everyone knows everyone and we get a kick out of it. Beloved and I passed by my manicure shop. I have not been there in months because of my lack of energy getting out and walking all of three blocks down the street. But that night the owner was inside of her shop, she looked up and saw me. Well, she actually looked like she had seen a ghost. And she ran out in to the street and hugged on me a while. I felt guilty about not seeing her in so long that I made an appointment that Monday. She was happy but worried Sparkle would be too much for me and turned to Beloved and said, "If she gets too tired, bring her back in here. I will give her some hot tea and let her rest while you continue enjoying yourself." Isn't that the dearest thing ever? Then I passed a very large food truck, which was ready to make your hamburger to specifications. And when I looked up, I saw "Big John" as we knew him at the hospital. 6'3 maybe and large. We all loved him and he loved his job. A local man who was the hospital's environmental services employee for years until he got a little cancer like me and has stopped working for now. He looked so different. Still tall but 150 pounds lighter thanks to the difficult road he has been walking. He leaped out of the food truck and hugged me saying, "You know I keep up with you through your blog." No, I would have never thought that in a million years. (Hey Big John!) We exchanged updates and on I walked. There I go again. I began crying. It comes so easily. This is the sweetest place with an old world charm. Sparkle is like getting all the neighbors out for the evening. When I looked up and saw the energy company's booth giving away homemade hula hoops, I just shook my head. They were taking tubing that they use in their business, cutting them at certain lengths and them affixing them somehow and handing them out. If you looked down Market Street, you could see dozens of yellow hoops going around and around and around the waists of kids and some adults as well! Having always lived in medium to large cities, I did not grow up with this kind of small town fun. Up until Saturday night, I had not been out of the apartment in at least three days. But I will tell you, the fresh air, seeing people I knew and then others  having sweet, simple fun on a late fall evening really did my spirit good. I needed it. By the way, when I went back on Monday, I got my pedicure. When I went to pay she told me it was a belated birthday and it was free. (This place is magical. I tell you!) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Just as I was about to click the publish button, I heard a knock at my door. A friend bearing lunch. He had been across the street a medical staff luncheon and gotten me a to-go meal. You tell me if this is not the best place!]]>     3849 0 0 0 1563 0 0 1564 0 0 1565 0 0 1566 0 0 1567 0 0 1569 0 0 1594 0 0     Still Singing the High Praises of Hospice http://www.sherrifillipo.com/2015/12/10/still-singing-the-high-praises-of-hospice/ Thu, 10 Dec 2015 18:08:48 +0000 http://www.sherrifillipo.com/?p=3863 bracelet

    Hospice visited yesterday. Remember the nurse comes every other week. We have a good time  chatting even while she takes my vitals and asks me all those personal things.  We talked today about my slips/trips/falls.  My last one being when John, my big fat cat heard the food container being filled and took me out at the knees. I landed on the couch, unscathed but heavens. If I had been in the middle of the floor, I would would be writing another story. My mother and my beloved both fret (they say with reason) about my mobility when I am alone. I really didn't used to but even now I am beginning to believe it. And since I have been placed on a little morphine around the clock (doesn't that sound oh so dramatic - it's not) I have agreed that something should be done. Little did I know that when I mentioned it to my nurse she said, "Oh yes. Hospice can help with that. We can set up a connection through your television service and the local hospital is in charge of managing it. It is just a small fee per month." Is there anything that they can't do? So far they have:
    • given me a wheelchair to use
    • helped me make a video to give to my son
    • their minister and I have worked on a memorial service in which he will lead
    • they are setting up this falls management program
    All while I sit comfortably in my apartment. I can't say enough about how well they take care of me and hundreds of others like me all across this region.]]>     3863 0 0 0 1576 0 0     Are Cancer Patients Able to Donate Blood, Organs, or Bone Marrow? http://www.sherrifillipo.com/2015/12/11/are-cancer-patients-able-to-donate-blood-organs-or-bone-marrow/ Fri, 11 Dec 2015 15:27:08 +0000 http://www.sherrifillipo.com/?p=3869 bodies in line

    With the holidays upon us and travel on the increase , I began to wonder where cancer patients (past and present) were on the lists of those who can or cannot not donate blood, organs, and bone marrow. This what I found:

    Blood:

    • You may not donate blood if you are currently being treated for cancer
    • You may not donate if your cancer is spreading or has returned
    • You may not donate if you had leukemia or lymphoma as an adult
    • The Red Cross states that if your cancer was 1-5 years ago and it has not returned, you may be eligible to donate again
    • The Red Cross also states that you are eligible to donate if your cancer has not spread, meaning they were able to remove all of  the cancer with surgery

    Organ Donation: 125,000 are waiting for transplants

    • Donating organs depends on the type of cancer you had
    • You may not donate internal organs if your cancer is spreading
    • Passing cancer on to another individual is very small
    • Almost anyone can donate their eyes except those with certain blood or eye cancers

    Bone Marrow Transplant:

    • You may donate bone marrow if your breast cancer is "healed" (their word) and it was in-situ, meaning it hadn't  extended outside the breast tissue
    ]]>     3869 0 0 0 1578 0 0 1579 https://www.mylifeline.org/StephanieSugars/updates 0 0     Educating Rita http://www.sherrifillipo.com/2015/12/14/educating-rita/ Mon, 14 Dec 2015 19:58:08 +0000 http://www.sherrifillipo.com/?p=3876 ned

    Although I am not crazy about it, Ned goes everywhere I go. Funny, my husband sort of likes him. Ned lulls him into thinking everything is all right even though all three of us know it is not true. That is the way it often is with metastatic breast cancer. After the shock of the announcement that the cancer has found its way out of your breasts, after the second onslaught of chemo, the second time your husband shaves your head and afterward you put on all of those stupid hats again, it almost becomes routine. And then a few months later, your oncologist says with a bright, wide smile, “Your scans show no evidence of disease (NED)” and everyone waits for you to jump up and shout for joy. But you know what? You don’t because unless that proverbial bus creams you on the way to the grocery store one morning, you know how this book ends. You don’t know how many chapters are left in the book, true – but you do know who dies in the end. So Ned hops in the car with me as I go about my day and when I meet friends for dinner, one of them will invariably say, “You look so great! You really do! You simply don’t look like you have cancer!” I know she means that as a compliment but I cringe inside as Ned looks on smiling. You see, Ned is a deceiver. He knows that I am not ok, that no matter how much make-up I apply I still don’t have eyelashes. That no matter how good I look, my life is being cut short. I may have two years left, maybe. But Ned is silent – there, but always silent. On one of my recent treatment days, Ned was there when a nurse told me that thanks to my reconstruction, I now had the breasts of a nineteen year old! I know she meant it as a compliment to offset an otherwise dreadful situation but I wanted to smack her and Ned both. Though my breasts are indeed beautiful, my chest wall, not to mention my right arm is numb. Completely numb. My reconstruction is all for show. When I am in a foul mood, I say my breasts are useless. Ned knows this and doesn’t care. Though I can carry on polite conversation in almost any situation, despite my disease and treatment regimen, Ned is right behind me watching. Case in point – I am a nurse but can no longer work full-time. At a hospital function a few months ago, a pharmacist who didn’t know my background asked me what I did with all my time since I didn’t work. Ned grinned. I told her without any drama, well maybe a little for effect, that when I wasn’t volunteering at a local hospital, I was getting treatment for breast cancer. “Well, you look great!” Ah, yes. I do look great. To tell you the truth the only way I get through conversations like the above mentioned is the satisfaction in knowing that at some time in the not so distant future, when my cancer returns, Ned dies. And I will be rid of him forever. No more lingering around, sitting on my shoulder, going with me everywhere I go. I guess in a way I do get to have the last word when it comes to Ned. Though the irony of the situation when this occurs is  not lost on me. (A version of this post was published at www.engagingpatients.org in June 2014.)    ]]>     3876 0 0 0 1600 0 0 1607 http://maesday.wordpress.com/ 0 0 1585 0 0 1586 0 0 1587 http://myleftlump.wordpress.com 0 0 1589 0 0 1590 0 0 1591 1590 0 1592 1589 0 1593 1586 0     Peanuts Philosophy: In a Nutshell http://www.sherrifillipo.com/2015/12/16/peanuts-philosophy-in-a-nutshell/ Wed, 16 Dec 2015 20:45:32 +0000 http://www.sherrifillipo.com/?p=3887 Peanut in a shell and cleared

    I have been a little out of sorts for the past few days. Other than the obvious, I don't know why. Maybe the obvious is enough. I awoke this morning and did my usual routine. And then scrolled down Facebook and saw an article about Charlie Brown. Don't even get be started on that sad little Christmas tree in one of Shultz's movies or I might sit here and cry until the rapture comes. But this article was written by  Jason Soroski who is a writer and musician. His bio at the end of the article state that he likes to "...[be] mindful of the small things that we may otherwise overlook in our everyday lives." I am with him on that. I do have an obsession on finding the "hidden" things that God has put before me to find if I will only go through the day, slow enough and mindful enough to see them. Which leads me back to Charlie Brown. Mr. Soroski states he noticed something in that classic A Charlie Brown Christmas that he had not noticed before. As you may or may not know, Linus never is without his blanket. In every cartoon he is either dragging that thing around or has it snuggled up to his left ear for comfort. During the scene in the cartoon where they are recreating the birth of Christ, Linus is ready for his big part. And in the cartoon you will notice that when he begins, he  drops his blanket and  and recites,
     [And the angel said unto them,] Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.  For unto you is born this day in the city of David a Savior  which is Christ the Lord.  Luke 8:10-12
    I agree with the Soroski that what Shultz did was simple and it was brilliant. And it is a reminder for us all to do that. Drop whatever security it is that you figuratively snuggle up to your ear and behold that we have a Savior who saves. One who is ultimately the best soft, blue blanket you can have. And He never wears out.]]>     3887 0 0 0 1598 0 0 1595 0 0 1596 0 0 1597 0 0     Merry Christmas to You All http://www.sherrifillipo.com/2015/12/17/merry-christmas-to-you-all/ Thu, 17 Dec 2015 21:28:47 +0000 http://www.sherrifillipo.com/?p=3898 3898 0 0 0 1601 0 0 1602 0 0 1603 0 0 1606 http://maesday.wordpress.com/ 0 0 1608 0 0 1618 0 0 1620 0 0 The Bride of Christ: Me! http://www.sherrifillipo.com/2015/12/21/the-bride-of-christ-me/ Mon, 21 Dec 2015 16:49:29 +0000 http://www.sherrifillipo.com/?p=3900 image

    We survived our 10 hour trip to the OBX and in the process learned that cats, just like people, react to medication differently. One cat was comotose the entire time, the other acted like I had given him an M&M and he talked the entire time. Two of the four kids arrived last night and we celebrated with a nice juicy steak and a night of football. This morning I woke up thinking about end of life things. Sorry, it's just true. And I thought about the memorial service that will be held at some point. So I emailed my former minister that I've written about  before and asked him how many people his facility would accommodate and then laughed and told him I felt like I was planning a wedding of which I would not be attending. And then he corrected me. He said, "Sherri, It is only fitting that you feel that way because you are the bride of Christ preparing to consumate her marriage. We will have a funeral. You will have wedding feast." It left me speechless, like I was living scripture I hadn't really thought of in a personal way and it made me shiver! Put another way, from the website, Got Questions:
    As believers in Jesus Christ, we who are the bride of Christ wait with great anticipation for the day when we will be united with our Bridegroom. Until then, we remain faithful to Him and say with all the redeemed of the Lord, “Come, Lord Jesus!” (Revelation 22:20).
    ]]>     3900 0 0 0 1611 0 0 1612 0 0 1613 1612 0 1615 0 0 1617 0 0     OBXMAS 2015 http://www.sherrifillipo.com/2015/12/28/obxmas-2015/ Mon, 28 Dec 2015 16:48:16 +0000 http://www.sherrifillipo.com/?p=3910 Santa Claus hat and slippers on the seashore against blue sky We had a riotous time here at the OBX on Christmas but I am still trying to shake off the 80 degrees that visited us on the 25th. There is something about the windows being open, causing the ornaments on the tree to  sway that strikes me as so odd (sorry my Floridian friends). I have to give a huge shout out to Momma Jane and Dad for coming to the rescue once again and bringing everything, and I mean everything for Christmas dinner. They remind me of the little green army men from Toy Story that repelled in with all the supplies. If it had been left up to the steam of my engine, we would have all shared a pack of nabs. My sister had come the day before and brought bags of food and snacks. We had a great Christmas Eve dinner of grilled chicken - if it's 80 degrees, you might as well grill, right? My son and his best friend pulled in around 7:00. As soon as I saw those big, blue eyes, my Christmas was complete. We all ate a lovely meal topped off by Bananas Foster, a family favorite that is hard to find on menus... Then we "unwrapped the tree" as my Grand dad would say and fell out laughing at some of the creative items people had come up with. I had a great time. Especially when Jim decided to sit in my lap. Yes, he was a big lap sitter as a little boy and then even as a gangly teenager...and I guess some habits are hard to break - even if you are 24 and quite heavy on your mother's old lap. I had a great OBXMAS and am hoping you and your family did as well.    ]]> 3910 0 0 0 1621 0 0 1622 0 0 1623 0 0 1624 0 0 The Velveteen Rabbit http://www.sherrifillipo.com/2015/12/30/the-velveteen-rabbit/ Wed, 30 Dec 2015 10:50:14 +0000 http://www.sherrifillipo.com/?p=3917 I am 55 years old and have never read the Velveteen Rabbit. Today, now that everyone has left and the tree and all the trimmings have been packed away, I decided to sit down and read it during this windy, rainy day.

    The gist of the children's book is that a little boy is given a  stuffed rabbit for Christmas and it eventually becomes the boy's bedtime favorite. The Rabbit is taught that if you are really loved, you may fall apart from all squeezing and hugging but at that point you can consider yourself real. After a loving relationship, the boy gets scarlet fever. When he recovers, the doctor says everything in his bedroom needs to be destroyed. The bunny is tossed. The story though simple, was relatable.  Loved, like Rabbit, I  feel tattered and torn from the surgeries over the years and sometimes when I look in the mirror (though the older I get the less I look) I don't like what I see. I completely understand how Rabbit felt. The upside is  if this is what it takes to be real, I have arrived. And then when he is tossed on the garbage heap for burning, I felt such empathy - I have had intermittent thoughts of having been tossed in to the "no longer needed pile" in the last few years. When he begins to cry and the fairy comes to whisk him away to the forest so that he can be real, the Fairy states, "You were only real to the boy. Now you will be real to everyone." I thought as I read, is the forest allegorical to heaven?  I will just sit here and believe that it is as we are told we will have new bodies, a new home and there will be no more tears in heaven.]]>     3917 0 0 0 1631 0 0 1632 https://www.mylifeline.org/StephanieSugars/updates 0 0 1642 0 0     Beth Caldwell: An Open Letter to Mark Zuckerberg http://www.sherrifillipo.com/2015/12/29/beth-caldwell-an-open-letter-to-mark-zuckerberg/ Tue, 29 Dec 2015 14:10:42 +0000 http://www.sherrifillipo.com/?p=3923 image

    December 22, 2015 Mark Zuckerberg Founder and CEO Facebook 1 Hacker Way Menlo Park, California 94025 Dear Mr. Zuckerberg, I'm writing to you to discuss the repeated suspension the Facebook account of a member of our organization, Beth Fairchild. Beth's account was recently suspended because she posted a picture of an areola tattoo that she performed on a woman who has been through a mastectomy with reconstruction. Once her account was reinstated, someone repeatedly reported more of her photos, and now her account has been suspended again. Beth is an important member of our organization, MET UP, whose mission is to change the landscape of metastatic cancer through direct action. Like many of our members, myself included, Beth has metastatic breast cancer, which is breast cancer that has spread to other parts of the body, and is incurable. Everyone with metastatic breast cancer will die of or with their disease, including Beth. And yet, despite this devastating diagnosis, Beth has decided to spend the time she has left being a fierce advocate for women who have breast cancer, including using her amazing skills as a tattoo artist to help women who have been through breast reconstruction. Many people don't realize that breast reconstruction after a mastectomy is nothing like breast augmentation done on women without cancer. In a mastectomy, the entire breast is removed, including the nipple. In order to rebuild the breast, doctors can build a nipple with tissue, although it will never feel like the removed nipple because it no longer has any nerves in it. And after a surgeon builds a nipple, it has no areola. In order to have the nipple look like the one that was removed, a tattoo artist like Beth must tattoo an areola on/around the rebuilt nipple. In addition, some women can't or don't have the nipple rebuilt, and instead have a 3-D areola tattoo, like the one Beth created and shared in the photo that initially led to her suspension. Facebook has standards for determining when nipples can be shown in photos shared on your site. Your community standard states, "We also restrict some images of female breasts if they include the nipple, but we always allow photos of women actively engaged in breastfeeding or showing breasts with post-mastectomy scarring." The photo that Beth shared clearly shows a mastectomy scar at the top of the breast. And yet, your staff suspended Beth's account because she was accused of violating the community standards-standards that explicitly allow this photo to be shared. In addition, once Beth's account was reinstated, someone reported more of Beth's photos that clearly do not violate Facebook's community standards, and her account has been suspended again. Those of us in the breast cancer community have found ourselves repeatedly targeted by people reporting post-mastectomy photos. This is consistent with the ongoing sexualization of our disease-a disease that will take Beth's life, and mine. That our cancer involves our breast does not make pictures of our scars and our reconstruction pornography, any more than photos of people with other amputations is pornographic. It has become exhausting having to repeatedly defend the posting of such photos, and to be blunt, your staff seems to have a difficult time following your standard that such photos will "always" be allowed. Indeed, Beth is not the first woman to share such a photo whose account has been suspended. Another breast cancer patient, Carrie Ellman-Larsen, had a blog post removed from Facebook just last week, likely because it contained pictures of reconstructed breasts. And so, I'm writing with two requests: that Beth's account be reinstated, since she clearly has not violated Facebook's community standards; and that you train your staff to recognize a post-mastectomy photo, so that this harassment from your users of women recovering from a mastectomy will finally end. We would be happy to help create training for your staff on identifying post-mastectomy photos or advising Facebook about issues surround breast cancer. I request a response from you or someone from Facebook as soon as possible, before Beth or any other of our members are targets of further harassment. Sincerely, Beth Caldwell Co-Founder, MET UP]]>     3923 0 0 0 1625 0 0 1626 0 0 1627 0 0 1628 1627 1 1629 0 0 1633 0 0 1904 http://www.yzyhbg.com/comment/html/index.php?page=1&id=13310 Vitamin Nutrition Store Beth Caldwell: An Open Letter to Mark Zuckerberg]]> 0 0     Goodbye 2015: It was One Whale of a Year http://www.sherrifillipo.com/2015/12/31/goodbye-2015-it-was-one-whale-of-year/ Thu, 31 Dec 2015 19:13:30 +0000 http://www.sherrifillipo.com/?p=3946 jim 2015

    I got a text from my son this morning that he and two childhood friends were headed to the mountains to bring in the new year. And it brought up instant memories of us spending a week up there in the fall - just the two of us. That will be a memory that I will cherish. The picture that you see here is of Jim and one of my adorable, fat cats, Simon. As you can tell, the three of us can hardly fit into one chair but we are giving it a go. I was so happy to have family and for the first time, my cats, with me to celebrate Christmas. As much fun as we had, Beloved decided and I agreed that we should head back a few days earlier than expected, so yesterday for eleven excruciating  hours we drove from OBX to NY. (Listen to me whine. Beloved drove the entire way.) We medicated both animals; one went off into never neverland and the other, the Siamese, serenaded us for about five hours, glassy-eyed and all until he gave up and joined his 'brother' John in medicated silence. Crazy family that we are. Minus the cats, we are headed back down the highway tomorrow for a quick day in Philly to celebrate with Beloved's family. This year we are playing dirty Santa but we love odd rules - the one this year is that gift has to be purple. Wish me luck. (Ask me sometime about the year when the gifts all had to begin with the letter 'x.' It nearly tore the family apart.) Saturday? I get a visit from Hospice. Regulations state that I only go 14 days without a visit. And Saturday is it. Happy New Year to you all who have stuck by me through 2015 with its ups and downs. I can only imagine that 2016 is going to give us much more but I'm up for it. Are you?]]>     3946 0 0 0 1634 0 0 1635 0 0 1636 0 0 1637 1635 1 1638 0 0 1643 0 0     Momma Jane and Winston http://www.sherrifillipo.com/2016/01/04/momma-jane-and-winston/ Mon, 04 Jan 2016 19:42:50 +0000 http://www.sherrifillipo.com/?p=3960 orange tabby

    Momma Jane called last night about supper time to check-in as she likes to say. We talked about a myriad of things until at one point she up and squealed, "Guess who's here?" She sounded pretty excited. I was going to go down a list of celebrities she likes given the enthusiasm of her exclamation but no one, not even the CIA could find them out in the rural woods of Youngsville, NC. So I listed off a few relatives. No, it ends up being Winston, the neighbor cat. I don't think she has ever been that excited to see me. You see, in the last couple of years, Momma Jane has softened and yielded to things that in her younger years, she did not have time for and pets would be one. I think Winston is highly clever. His home is next door to Mom but that household has two beautiful British shorthair cats who live a life of luxury inside that lovely home. Winston, think Morris the cat, is a large, take no prisoners, tabby who could probably eat a mouse (rat?) in one large  gulp. He lives outside. I am not sure if he is ever invited inside his home or not. I will need to check. But it delights Mom to no end to come home and find him curled up on one of her garden chairs as if her home was his home. The other night I was talking to her and she started to giggle. I wasn't sure what was happening as I wasn't saying anything particularly funny, so I thought maybe Pop was up to something frisky when Momma Jane exclaimed that Winston had jumped up in her lap (which he does not do) and snuggled up into her bosom to find a nice cushy place to take a nap. I told her right then and there that she should start luring him in and take him as her own. She says he won't stay long inside the house if she leaves the door open. He might walk in, circle the kitchen and walk out. So, for Christmas, my two well-mannered, well-raised cats took money out of their allowance and bought Winston a bag of cat treats. They assured me that a treat here and there was all he needed to become Momma Jane's new cat. She was so excited to find a present for Winston that she did not open it. (With all the mayhem in my home at the time I did not notice that she had slipped the gift into her purse.) So last night, I told her to get the treats out for Winston. "Oh, I haven't unwrapped them yet. I am taking them over to the neighbors."  Huh? "Mom, they're for Winston for you to use to entice him into your home. They are not for the neighbors!" "Oh" she says and runs and get them. In a matter of moments, she is squealing again as Winston starts to scarf up a few kibbles. I told her to take them into the kitchen and give him a few there. As she walked in she said, "Should we put those in a bowl?" "No, Momma you're not serving dinner, it's just a treat. Put them on the ground." She laughed as apparently Pop was fixing baked potatoes for dinner and she was luring Winston all the while she was directing Pop about dinner. I left them to have their dinner. Mom was thrilled that Winston stayed in the kitchen licking the floor where the treats were. I was thrilled she had not mixed up dinner for my dad, he sitting down to a bowl of kibbles and Winston figuring out how to eat a baked potato. (It shouldn't have to be this difficult!)]]>     3960 0 0 0 1647 0 0 1648 0 0 1650 0 0 1655 0 0     What Progression Looks Like http://www.sherrifillipo.com/2016/01/05/what-progression-looks-like/ Tue, 05 Jan 2016 18:47:11 +0000 http://www.sherrifillipo.com/?p=3974 Groceries

    Because regulations require that I am seen every 14 days, Hospice came Saturday evening. They are nothing if not accommodating. So as we sat by the light of the Christmas tree we discussed my health (it gets old talking about my digestive issues but I get it!) And somehow we started talking about activities of daily living and I had an epiphany as it were. Because I don't look much different, except a few extra pounds packed on for good measure, it's difficult for friends and family to "see" my downward progression. But that evening, I realized I had a tangible example of where I was and where I am now:
    • A year ago, I could walk to the grocery store, get my groceries, and walk back to the apartment.
    • At some point last year, I started driving to the store, getting groceries, and driving back.
    • Last fall, Beloved began to drive me and I would get what I needed and we would drive home.
    • Around October, I began asking if he could do the shopping for me, letting me rest here on the couch.
    And that is where we are today. This is only one example of how I can show you that things aren't getting better and they're not expected to. This is a tough disease that will take you down quickly or slowly. It's all up to those out of control cancer cells. I am ready, come quickly or slowly. Again, I say Hospice is the best thing one can do when faced with a terminal outcome. They are warm, loving people ready to give/fix/help in any way they can. Through talking with them, they help clarify for me how my life is changing  - like the example above. It's one of many things they do. They help keep me at peace.]]>     3974 0 0 0 1654 0 0     Hospice Re-registration? http://www.sherrifillipo.com/2016/01/07/hospice-re-registration/ Thu, 07 Jan 2016 20:38:31 +0000 http://www.sherrifillipo.com/?p=3983 Room in the old hospital

    Today I had yet another meeting with Hospice but this time it was for re-registration, a physical assessment of my current state. Hospice requires such an assessment every two months (to ensure I still qualify for services) which I find so ironically funny - as if one day someone will walk in my apartment and discover that my cancer has abated and I no longer meet the criteria to stay in Hospice and then she will simply walk out never to return again. But as one who spent many years working in the regulatory side of healthcare, I understand that these things need to be done. Even though I spent a lovely Saturday evening with one of the nurses just last week. I really shouldn't complain. They are they only ones who darken my doorway except for my adorable neighbor who I have told can not move away from me until I am gone. And then she is free to do whatever she wants. Ha. Anyone when asked, "Hey if I need morphine one day and can't get it myself, will you give it to me?" Without a second's hesitation, "Heck yeah." She is the one you want to go to jail with or be stuck on an island with. In fact, I feel quite certain if she went on Survivor, she would win hands down. But I digress. Back to hospice. The nurse who conducts these re-registration assessments is a nurse practitioner. The other nurses who arrive at my doorstep every other week are not. So, today she came and listened to me tell her my woes of pain, bloating, memory loss  - all those things you DON'T put on match.com and then she listened to my lungs and heart and that was it. (She will take the info back when they have their team meetings and the hospice physician actually deems me eligible or not.) Wait? Really? John, my big boy cat, had hardly had time enough to waddle up to her and charm her. She was gone before he knew it. It was rather comical. He looked up at me like, "That's all you got for me?" Yep, John that's all for today. Now come over her and sit back down on my lap.      ]]>     3983 0 0 0 1669 0 0 1666 http://smithdickeysvercl.wordpress.com 0 0 1667 0 0     Epiphany http://www.sherrifillipo.com/2016/01/11/epiphany/ Mon, 11 Jan 2016 12:55:34 +0000 http://www.sherrifillipo.com/?p=3994 image Friday evening, Beloved took the first ornament off the tree. I know most of you have already stowed your decorations away for the year. I was not raised with the Christmas tradition of the 12 days of Christmas, which places celebrations through epiphany which is when the Magi arrived. But Beloved has long celebrated this way and I have no reason to disagree. While epiphany came and went January 6, Friday was the first time Beloved could start dismantling the tree. How much I love watching sports, movies, and whatnot at night by the gentle light of the tree. It was magical no matter what was or wasn't on TV. Tonight I am a bit sad. I'll be honest. As the tree deconstructs, I am sitting here wondering if this might be the last time I ever see it in its full glory. Only God knows. But there is nothing more bedraggled looking than a Christmas tree  with half its baubles off in a box. I fully believe whatever I see in heaven will make this tree pale horribly in comparison but right now I am not there. And I find this tree soothing. But there is nothing to be done about it. The funny thing? Beloved set up a skinny tree in our bedroom last year and every evening I turn it on when I get my pajamas out and turn back our covers. It gives me a little sparkle of Christmas throughout the evening. Just enough to get me through until next Christmas.  ]]> 3994 0 0 0 1676 0 0 1677 0 0 1678 http://nono 0 0 1679 0 0 The Loss of a Child http://www.sherrifillipo.com/2016/01/09/4007/ Sat, 09 Jan 2016 21:33:39 +0000 http://www.sherrifillipo.com/?p=4007 calm-blue-ocean-14485.jpg 7 Things I’ve Learned Since the Loss of My Child OCTOBER 31, 2015 by Angela Miller Child loss is a loss like no other. One often misunderstood by many. If you love a bereaved parent or know someone who does, remember that even his or her “good” days are harder than you could ever imagine. Compassion and love, not advice, are needed. If you’d like an inside look into why the loss of a child is a grief that lasts a lifetime, here is what I’ve learned in my seven years of trekking through the unimaginable. 7 Things I've Learned Since the Loss of My Child 1). Love never dies. There will never come a day, hour, minute or second I stop loving or thinking about my son. Just as parents of living children unconditionally love their children always and forever, so do bereaved parents. I want to say and hear his name just the same as non-bereaved parents do. I want to speak about my deceased children as normally and naturally as you speak of your living ones. I love my child just as much as you love yours– the only difference is mine lives in heaven and talking about about him is unfortunately quite taboo in our culture. I hope to change that. Our culture isn’t so great about hearing about children gone too soon, but that doesn’t stop me from saying my son’s name and sharing his love and light everywhere I go. Just because it might make you uncomfortable, doesn’t make him matter any less. My son’s life was cut irreversibly short, but his love lives on forever. And ever. 2). Bereaved parents share an unspeakable bond. In my seven years navigating the world as a bereaved parent, I am continually struck by the power of the bond between bereaved parents. Strangers become kindreds in mere seconds– a look, a glance, a knowing of the heart connects us, even if we’ve never met before. No matter our circumstances, who we are, or how different we are, there is no greater bond than the connection between parents who understand the agony of enduring the death of a child. It’s a pain we suffer for a lifetime, and unfortunately only those who have walked the path of child loss understand the depth and breadth of both the pain and the love we carry. 3). I will grieve for a lifetime. Period. The end. There is no “moving on,” or “getting over it.” There is no bow, no fix, no solution to my heartache. There is no end to the ways I will grieve and for how long I will grieve. There is no glue for my broken heart, no exilir for my pain, no going back in time. For as long as I breathe, I will grieve and ache and love my son with all my heart and soul. There will never come a time where I won’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family. I wish people could understand that grief lasts forever because love lasts forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute over the course of a lifetime. Every missed birthday, holiday, milestone– should-be back-to-school school years and graduations; weddings that will never be; grandchildren that should have been but will never be born– an entire generation of people are irrevocably altered forever. This is why grief lasts forever. The ripple effect lasts forever. The bleeding never stops. 4). It’s a club I can never leave, but is filled with the most shining souls I’ve ever known. This crappy club called child loss is a club I never wanted to join, and one I can never leave, yet is filled with some of the best people I’ve ever known. And yet we all wish we could jump ship– that we could have met another way– any other way but this. Alas, these shining souls are the most beautiful, compassionate, grounded, loving, movers, shakers and healers I have ever had the honor of knowing. They are life-changers, game-changers, relentless survivors and thrivers. Warrior moms and dads who redefine the word brave. Every day loss parents move mountains in honor of their children gone too soon. They start movements, change laws, spearhead crusades of tireless activism. Why? In the hope that even just one parent could be spared from joining the club. If you’ve ever wondered who some of the greatest world changers are, hang out with a few bereaved parents and watch how they live, see what they do in a day, a week, a lifetime. Watch how they alchemize their grief into a force to be reckoned with, watch how they turn tragedy into transformation, loss into legacy. Love is the most powerful force on earth, and the love between a bereaved parent and his/her child is a lifeforce to behold. Get to know a bereaved parent. You’ll be thankful you did. 5). The empty chair/room/space never becomes less empty. Empty chair, empty room, empty space in every family picture. Empty, vacant, forever gone for this lifetime. Empty spaces that should be full, everywhere we go. There is and will always be a missing space in our lives, our families, a forever-hole-in-our-hearts. Time does not make the space less empty. Neither do platitudes, clichés or well-wishes for us to “move on,” or “stop dwelling,” from well intentioned friends or family. Nothing does. No matter how you look at it, empty is still empty. Missing is still missing. Gone is still gone. The problem is nothing can fill it. Minute after minute, hour after hour, day after day, month after month, year after heartbreaking year the empty space remains. The empty space of our missing child(ren) lasts a lifetime. And so we rightfully miss them forever. Help us by holding the space of that truth for us. 6). No matter how long it’s been, holidays never become easier without my son. Never, ever. Have you ever wondered why every holiday season is like torture for a bereaved parent? Even if it’s been 5, 10, or 25 years later? It’s because they really, truly are. Imagine if you had to live every holiday without one or more of your precious children. Imagine how that might feel for you. It would be easier to lose an arm, a leg or two– anything— than to live without your flesh and blood, without the beat of your heart. Almost anything would be easier than living without one of more of your precious children. That is why holidays are always and forever hard for bereaved parents. Don’t wonder why or even try to understand. Know you don’t have to understand in order to be a supportive presence. Consider supporting and loving some bereaved parents this holiday season. It will be the best gift you could ever give them. 7). Because I know deep sorrow, I also know unspeakable joy. Though I will grieve the death of my son forever and then some, it does not mean my life is lacking happiness and joy. Quite the contrary, in fact, though it took awhile to get there. It is not either/or, it’s both/and. My life is more rich now. I live from a deeper place. I love deeper still. Because I grieve I also know a joy like no other. The joy I experience now is far deeper and more intense than the joy I experienced before my loss. Such is the alchemy of grief. Because I’ve clawed my way from the depth of unimaginable pain, suffering and sorrow, again and again– when the joy comes, however and whenever it does– it is a joy that reverberates through every pore of my skin and every bone in my body. I feel all of it, deeply: the love, the grief, the joy, the pain. I embrace and thank every morsel of it. My life now is more rich and vibrant and full, not despite my loss, but because of it. In grief there are gifts, sometimes many. These gifts don’t in any way make it all “worth” it, but I am grateful beyond words for each and every gift that comes my way. I bow my head to each one and say thank you, thank you, thank you. Because there is nothing– and I mean absolutely nothing– I take for granted. Living life in this way gives me greater joy than I’ve ever known possible. I have my son to thank for that. Being his mom is the best gift I’ve ever been given.]]> 4007 0 0 0 1680 http://leatherandlacemc.com 0 0 1681 1680 1 Thank you Jen: A Huge Bucket List Item Marked Off http://www.sherrifillipo.com/2016/01/12/thank-you-jen-a-huge-bucket-list-item-marked-off/ Wed, 13 Jan 2016 00:08:36 +0000 http://www.sherrifillipo.com/?p=4011 image

    This post is nothing but  unabashed bragging. I drafted an article for the Association of perOperative Registered Nurses (AORN) Social Media in the OR in the spring. The organization was quite interested but based on feedback I received from peer reviews, required some fluffing here, plumping there. My  predecessor at Cone Health, Jennifer Fencyl (Dr. Fencl to you - ha) and I had lunch with our mutual friend and colleague, Bev, in the spring and I showed her the article. She loved it. She is all about writing and publishing. I told my energy wasn't able to do the fine tweaking they were asking me to do. You know what she said, " I will do it for you."And suddenly, I saw this long term dream becoming a reality. On a fast tracked schedule, we were told the article would be out in the January 2016 edition and it was! The topic has nothing to do with breast cancer but everything to do patient safety. The title, Social Media in the OR: More than Just Cell Phones. Dr. Fencl is outrageously passionate and in love with Operating Room. She knows my heart and how much it meant to me to tie this up before I got too sick to do so. Thank you Jen from the bottom of my heart. *********************** Social media is part of everyday life in America.1-3 Personnel at all health care organizations should endeavor to balance the highest standards for patient safety with the ever-present existence of social media.4-6 A celebrity who died in an outpatient surgical setting in New York recently catapulted this conversation into the public eye.7 Joan Rivers’ death painfully highlights how social media may be in direct conflict with patient safety. Ms Rivers entered a Manhattan endoscopic outpatient facility to undergo a laryngeal procedure with a chief complaint of an increase in the raspy quality of her voice. Because of what appears to be a cascade of errors that occurred during her surgery, Rivers died several days postoperatively.8 The Centers for Medicare & Medicaid Services (CMS) cited the clinic for several errors that transpired during her surgical care,9 Read more  ]]>     4011 0 0 0 1682 0 0 1683 1682 1 1684 0 0 1685 0 0 1687 0 0     The New Year http://www.sherrifillipo.com/2016/01/15/the-new-year/ Fri, 15 Jan 2016 20:36:49 +0000 http://www.sherrifillipo.com/?p=4031 nest in snow

    It's funny when my blogs stop, I get  a few texts or emails checking in on me. I think it is absolutely endearing but you will know when the last blog is written I promise you. For those of you who have been bobbing along with me on this (I won't say journey; I just hate that word) path know that I get a lot of my wisdom from my hairstylist, Dustin. Well, I saw him today which drummed up in my mind something he said a year ago (read that blog post here) which was if I was going to start a blog about living and dying with breast cancer, I needed to be honest with my readers and not gloss over the bad parts as he said, "it is not a pretty disease." This leads me to why I have not been writing. I am in the worst mental place as I have ever been with this disease. If I have come across all chipper about it, I have done you a disservice. So, I am telling you now, I am mourning my life. I am weeping over my son losing his mother. I am grieving over a marriage which is still young and tender. Did you know? Today Hospice came and I greeted her at the door crying. She was alarmed and we sat down immediately and I began to tell her how my mental state has taken a nosedive. Blubbering, pulling tissues out about as fast as I could, I told her I had had days of crying. She sat there and nodded. She is so so very good at what she does. When I told her how this has all come about since Christmas, she nodded again and said what I am feeling is considered to be a milestone in the progression of the disease. The body and mind held it together for the holidays and afterward, there was a sighing, a letting go and the mourning began. She said this is one of the more important signs of progression, more so than some physical signs. She looked around the apartment and noticed a few things and then remarked, "You have begun to nest; like women who are about to have a baby...getting things in order..." She hit the nail on the head. She said, "You are trying to get the important things done before you get to a point where you no longer can." I tell you she is amazing. She said, "Even your decreasing blogs indicate that you are beginning to detach from the world." Wow. I told her I was aware I wasn't keeping a five day schedule anymore and didn't know why. She put so many pieces of the puzzle together for me this afternoon. I truly don't see how anyone can get through this phase of life without Hospice. I am so grateful.]]>     4031 0 0 0 1688 0 0 1689 0 0 1691 0 0 1692 0 0 1693 0 0 1694 https://www.mylifeline.org/StephanieSugars/updates 0 0 1695 0 0 1696 http://maesday.wordpress.com/ 0 0     Sherri Died Surrounded by Loved Ones http://www.sherrifillipo.com/2016/04/11/sherri-died-surrounded-by-loved-ones/ Mon, 11 Apr 2016 15:14:21 +0000 http://www.sherrifillipo.com/?p=3965 8/28/1960-4/10/2016

    [caption id="attachment_3966" align="aligncenter" width="700"]The illustration shows the girl who admires the star sky I had so much more to say...[/caption]]]>     3965 0 0 0     An ED Physician Writes About End of Life http://www.sherrifillipo.com/2016/01/18/an-ed-physician-writes-about-end-of-life/ Mon, 18 Jan 2016 19:37:00 +0000 http://www.sherrifillipo.com/?p=4037 bed

    I was skimming through LinkedIn last night while football droned on.  I don't cling to it as I used to; the reason is obvious. But I stumbled upon an article written by an ED physician that was so insightful, so spot on that I wanted to quote portions of it to you. It was written by Louis M. Profeta, MD. Not only is he an Emergency Room physician, he is also an author and public speaker on the topic of spirituality in medicine. And if you don't mind me saying so, spirituality in healthcare organizations is sorely needed. The title of the article is: I Know You Love Me - So Let Me Die. He begins like this:
    In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would in days gone past watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went. These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away. She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart. You see, that’s how she used to die. We saw our elderly different then.... This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip. You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in cage of bed rails and soft restraints meant to "keep her safe." She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew. She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up exposing the underlying bone, which now becomes ripe for infection...
    Although he is specifically writing about elderly patients, I know he extends it to those of us who have terminal illnesses. I commented (one of more than 500 on this posting) that I was 55 and dying of terminal breast cancer. And a nurse of 25 years. I also wrote that I am choosing to die at home with family under the care of hospice away from the technology that surrounded me for 2 1/2 decades. Imagine my surprise when I woke up this morning with a response back from him! "If I could climb through the wires and hug you I would. It really sounds like you are 'living' with metastatic breast cancer, Sherri..." I guess he and I are on the same page.]]>     4037 0 0 0 1697 0 0 1698 0 0 1699 http://gravatar.com/lauradcouch1 0 0 1700 0 0 1701 0 0 1702 0 0 1703 http://desertranchgal.wordpress.com 0 0 1704 0 0 1705 1699 0 1706 1700 0 1707 1702 0 1708 1704 0 1709 0 0 1711 0 0 1713 0 0 1715 0 0     What Life is Really Like After Breast Cancer: Joan Lunden Gets Personal - Here We Go Again http://www.sherrifillipo.com/2016/01/22/what-life-is-really-like-after-breast-cancer-joan-lunden-gets-personal-here-we-go-again/ Fri, 22 Jan 2016 20:38:14 +0000 http://www.sherrifillipo.com/?p=4050 Breast cancer awareness ribbon elements women figures seamless pattern background. Vector file organized in layers for easy editing. I read an article about Joan Lunden this week (originally written in Prevention.com January 21, 2016 and today on Yahoo Prevention). The last article I read was two years ago in People magazine which touted, "I'm going to beat this cancer." I responded in  this blog that the cancer got to decide whether you won or lost at this cancer game, not the person. Her bright smile on the cover made me so angry as I sat and wondered about the impact she was going to have on less informed patients. I invited her to call me. She never did. Then today while I was in a waiting room I saw this: What Life is Really Like After Breast Cancer: Joan Lunden Gets Personal. I couldn't wait to get personal with Joan, to see what nuggets of wisdom she was going to share with the world - maybe something I had missed in my three year metastatic journey. I mean after all, no one was knocking on my door asking me what I had learned. So here is the positive that I need to give her credit for:
    • "I thankfully had been warned by the nurses that while everyone thinks you want to go celebrate [post-treatment], it’s interestingly and oddly emotionally difficult. They were right. I cried like a baby."
    • "Can you ever really feel safe and secure again? Cancer is not something that you get and get cured and never worry about again. It really isn’t."
    What I believe she still does not get, is her idea that a lot of prevention from breast cancer can occur by being "vigilant." I know there are women who believe this but I am not one. Here are some examples of where she and I philosophically part ways:
    • "I feel compelled to go out there and warn other women and make them more aware and make them more vigilant. And understand it’s not just about family history. It’s about the lifestyle choices that we make: whether or not we exercise, what we’re consuming, our stress levels, our lack of sleep. And all the other risk factors that can make us susceptible not only to breast cancers but all the other cancers."
    • "America hasn’t embraced this yet. Prevention is the one thing within our power, within our reach. And yet it’s easier to just say, “Well, you know, it’s destiny.” It’s not destiny. We predetermine our longevity by the life choices and the health choices we make today."
    This prevention ideology is a stand alone theory that I can embrace. Everyone should watch their diet, exercise etc. But to lay a burden on women who have not been as vigilant as Lunden says we should be is a double blow to them when they find out they have breast cancer. Take me for example until cancer I was: tall, lean, ate well, did not smoke, drank moderately, never missed a mammogram. My middle name was vigilant. And where did it get me? Hospice! Yes, that's right all the way down to the end of the road. Now, if I were less educated, less informed, not a nurse and a lover of People magazine, how would I be feeling right now? I would be scolding myself for not being as vigilant as Joan Lunden. It wouldn't be fair. And I don't think it would be correct.]]>     4050 0 0 0 1722 0 0 1714 0 0 1716 0 0 1717 0 0 1718 0 0 1719 0 0 1720 0 0     Corning Updates and Momma Jane http://www.sherrifillipo.com/2016/01/25/corning-updates-and-momma-jane/ Mon, 25 Jan 2016 21:23:10 +0000 http://www.sherrifillipo.com/?p=4064 corning lights photo: flickr.com[/caption] On the chance that some of you are still thinking about moving up here to Corning to live near me since I have been telling you all the lovely things that go on here, I need to offer you some updates:
    • I understandably got a dozen inquiries about how much snow I was trapped under this weekend. Are you ready? Zero inches. You heard me right. We are too far north to get those noreasters  so, though cold, it was sunny and clear.
    • Friday night was 'Pajamarama' in downtown Corning. From 8:00pm - midnight, every store was open with tons of sale items and you were encouraged to come in our your pjs and shop. There was actually a prize being given for the best pajamas. Since I stay in mine all the time now, I was soooo tempted to go, feeling that I would easily take home first prize. But then, again, I consider myself a professional pajama wearer and felt it wouldn't be fair.
    So, since it's Monday, I thought I would give you a little Momma Monday. I do like to mess with her a lot. And she takes it oh so well. So, I called her up Friday night, "What are you doing? " "Looking on the internet for a king comforter. You know I have been  fiddle-farting around with this idea for a year now." I burst out laughing and told her I was quoting her verbatim. She dared me. She lost. My dad loves it when she says something has to 'speak to her' before she can buy it or allow it to come into her home. I have often thought about Winston the cat from a couple of blogs back and what has been said between the two of them - Winston and Jane- behind Dad's back since Winston could have the reign of the house if he wanted. At any rate,  I asked her, "Mom, has anything spoken to you yet? Can you even find the right color of taupe for the bedroom?" "Oh, yes. Just don't tell your father . You know how he gets jiggly about these things." (I have no idea what that means and I didn't ask.) I did get around to asking her about coming up that night for pajamarama knowing that it was a 10 hour drive, she couldn't make it. She said she would love to and then went on to tell me all the virtues of Corning, NY. She is too funny.  ]]>     4064 0 0 0 1723 http://cancerqueen.me 0 0 1724 0 0 1728 0 0     J: A Good and Faithful Servant http://www.sherrifillipo.com/2016/01/26/j-a-true-and-faithful-servant/ Tue, 26 Jan 2016 18:49:37 +0000 http://www.sherrifillipo.com/?p=4073 Bucket

    I should have introduced you to my friend and housekeeper by now. Since she just left, she was on my mind and now I can. She came into my life two years ago, a friend of a friend. She began to clean my former apartment and then 'moved' with me to the one I am living in now. Up until then, I had worked full-time and cleaned the house on Saturday, much like all of you do now. When I began to have difficulty getting this done, it was one of my first signals that the disease was beating me. J comes every other week. At this point in our relationship and my disease, she has her own key and lets herself in the door. I guess this is another sign of progression. In the beginning, I would be having coffee and milling around when she came, and I would let her in and off she would go. Then later, I would hear her turn the key and I would get up and meet her. Now? Today, she had been in the apartment 3 1/2 hours before I heard her and got out of bed. The back bathroom is hers where she keeps her arsenal. Brooms and mops and squirt bottles of all kinds of things. I would not trade her for the word. I feel very fortunate that a few months ago she announced her retirement. I almost died on the spot - forget the cancer. But she quickly told me she was keeping two accounts, mine being one! Ha! Who needs powerball? I won one of two tickets! J keeps a little notebook in the kitchen to remind herself of where she is going to deep clean that week. Beside it is usually a bag of raw almonds and a bottle of water. No, she is not some young thing. This woman is maybe 10 years older than me but could clean you under the table. Nevermind for fun, she and her husband cycle 18 miles in the evening (while I sit and ruminate whether I can get to foyer on the first floor and mail my letters). Sometimes by the coffee maker, there will be homemade cookies. Other times, I will open the refrigerator and find a couple of carrots, beans and whatnot out of her garden. And at Christmas, she makes small pies of either cherry, apple or peach. I sorta ate mine and Beloved's and had to confess it to J when Beloved started hunting around in the kitchen for his. He should have noticed a drip of peach juice at the corner of mouth but didn't. I texted her and confessed. A day later she knocked on my door with cherry and apple pie. Oh how I love her! I know. She sounds like an angel and she is. After she has spent 3-4 hours on an 1100square foot apartment (!) she puts her things away and sits down on the couch where I am, takes my hands in hers and prays. Every time. I have never known anyone who deserves the phrase, "Well done, good and faithful servant" more than she. Today she said to me, "I have been thinking about you two. And it's time to start cooking. Would you be interested in me making different containers of meals that you two could manage in the evenings?" Yes! Yes! Another reason to love Corning. I do know how blessed I am. I truly do.]]>     4073 0 0 0 1725 0 0 1726 0 0 1727 http://smithdickeysvercl.wordpress.com 0 0 1729 0 0 1730 http://ppowell453.wordpress.com 0 0 1731 0 0 1732 0 0     Travel Mercies http://www.sherrifillipo.com/2016/01/29/travel-mercies/ Fri, 29 Jan 2016 17:29:55 +0000 http://www.sherrifillipo.com/?p=4081 image

    I have family traveling this weekend and it reminded me of a phrase that a friend taught  me and that was the saying of "travel mercies." I told my friend I was surprised I had never heard of it but  I hadn't. It started being used in the 19th century among missionaries as they headed out to their mission field. You can imagine all of the things they needed divine help dodging. Later, in the 20th century the term spread to non-missionaries as a way to pray and say good-bye to friends and family before setting off on any kind of travel. I know God watches over us with or without the phrase being prayed  but I find it an endearing phrase which sums up so much that the one praying wants to convey to cover his/her family and friends with. So as my family travels today, I pray travel mercies over them and over you as well if you are heading out this weekend.]]>     4081 0 0 0 1733 0 0 1734 0 0 1735 1734 0 1736 0 0     Further Hospice Updates http://www.sherrifillipo.com/2016/02/01/further-hospice-updates/ Mon, 01 Feb 2016 16:28:52 +0000 http://www.sherrifillipo.com/?p=4090 image

    I had a long but productive afternoon with Hospice on Friday. I am beginning to denote the meeting by the number of tissues I use and last week was a 17 tissue conversation. She is so good at laying down the puzzle pieces and allowing me to put them together. The one thing that I have been fretting about is the amount of sleep my body is requiring. I generally wake up at lunch time out of a deep sleep and jump up like I have somewhere to go. I don't. She explained to me (again) that my disease is progressing classically. In the beginning, a patient starts out being able to be in charge of symptoms. Later, the disease meets the individual eye-to-eye  so to speak and then later, the disease takes over until death comes. I have been eye-to-eye for a while. In the last two weeks, I can tell the control is shifting. The disease is beginning to win. So, sleeping is not a bad thing, nothing to be embarrassed of. It just is. Our goal now is to somehow work the morning morphine in so I can take my evening. Yes, the pain continues to increase. Another milestone. Both Beloved and my nurse separately commented how I am wearing the disease on my face now. Hmmm. That I am looking haggard. Momma Jane, Dad and I are having more conversations about my move south to their home and transitioning care there. It feels like this move may be coming sooner than later. I feel blessed that I have resources in which to use and that my family is on the same page with me.]]>     4090 0 0 0 1737 0 0 1738 0 0 1739 0 0 1740 0 0 1741 0 0 1742 1741 0 1743 0 0 1744 https://www.mylifeline.org/StephanieSugars/updates 0 0 1745 1741 0 1746 1745 0 1747 http://maesday.wordpress.com/ 0 0 1748 0 0 1749 0 0 1752 0 0     Nothing Could Be Finer Than to be in Carolina...? http://www.sherrifillipo.com/2016/02/03/nothing-could-be-finer-than-to-be-in-carolina/ Wed, 03 Feb 2016 14:40:04 +0000 http://www.sherrifillipo.com/?p=4098 Wooden puppet sitting on wooden background

    This week has been like no other. After Hospice left Friday afternoon, I felt dizzier than I have felt since becoming under their care. I chalked it up to having more meds onboard (increased morphine and a medicine to stop the itching which is a classic symptom of the disease.) And now I am having leg, arm, and feet jerking. It doesn't  hurt but I aware of dropping and spilling when it occurs. I called my nurse, thinking it might be over medication but instead she said it muscle breakdown. Yet another classic symptom of disease progression. That night I had difficulty getting up from the couch and once up, couldn't balance myself to go anywhere. By now, you know Beloved doesn't say much but he looked up from his computer and said, "Your symptoms are steadily getting worse. Getting you to NC may becoming more quickly than we had imagined." We had planned a weekend trip to Raleigh to have conversations about the service, living with my mom and dad, the burden that this arrangement would put on them and so on. While we thought about going down in Spring, I don't think time is on our side. So, I called Hospice last night and requested a meeting for Friday morning with my nurse. Beloved will attend as well. With all these other symptoms that have started up this week, I wanted Beloved to have a one-on-one with her and so we can begin to make our life changing experience.]]>     4098 0 0 0 1750 0 0 1751 0 0 1753 0 0 1754 1750 1 1755 0 0 1756 0 0 1757 0 0 1758 0 0 1759 0 0 1760 0 0 1761 0 0 1762 0 0     Hospice Meeting http://www.sherrifillipo.com/2016/02/08/hospice-meeting/ Mon, 08 Feb 2016 14:18:59 +0000 http://www.sherrifillipo.com/?p=4123 Cross in the snow on a Danish graveyard Well, last week was tough. It got to the point when my neighbor texted to check-up on me, I texted that she had better roll up a towel and put it against her front door as my tears at some point soon were  going to flow under my door and across into her apartment. Good thing she has a sense of humor. She is #1 on the medical alert list. If I go down, she gets notified first. Bless her heart. There are not enough people like her in the world. I cried on her shoulder more than once last week. So the hospice nurse and Beloved met with me on Friday as I wanted to make sure I was hearing things correctly. I don't trust myself. Even writing things down is no longer trusty. I sent a note to someone last week and when Beloved saw it, he gently told me he could not read it. I was stunned as I have always had nice handwriting. And then when I looked at it again, I realized I couldn't read it either...anyway, back to the hospice visit. I verbally listed out for them what I knew to be progression of symptoms. And they simultaneously nodded their heads. I told them I needed them to talk me through the progression versus the trip to NC.(We have flights booked for late February to visit.) And I wondered when after that point, I should be thinking about staying. They both looked at each other. I realized that I must have already asked that question. They both reminded me how much in the last two weeks the disease had progressed. And as the snowball begins to roll, like it has, it can pick up speed and there is no turning back. It was time to plan to go to NC prior to the end of month plans already in place. There is a hospice in Wake County that we have chosen. That's really all that's left to do, to have my nurse here transfer the care over along with the usual paperwork. After the meeting, they both left to go back to work, I fell asleep on the couch. The first time I have slept during the day since the diagnosis of the disease.  ]]> 4123 0 0 0 1764 0 0 1765 0 0 1766 https://www.mylifeline.org/StephanieSugars/updates 0 0 1767 0 0 1768 0 0 1769 http://HopeandCourage.com 0 0 1770 0 0 1771 http://maesday.wordpress.com/ 0 0 1772 0 0 1773 0 0 1774 1764 1 1775 1765 1 1776 1766 1 1777 1767 1 1778 1768 1 1779 1769 1 1780 1770 1 1781 1771 1 1782 1772 1 1783 1773 1 1784 0 0 1785 1784 1 1786 0 0 1787 0 0 1788 1786 0 1789 1787 0 1790 0 0 1792 0 0 1793 0 0 1794 0 0 1795 0 0 1797 http://www.darngoodlemonade.com 0 0 1812 0 0 He Will Wipe Away Every Tear http://www.sherrifillipo.com/2016/02/09/he-will-wipe-away-every-tear/ Tue, 09 Feb 2016 20:09:24 +0000 http://www.sherrifillipo.com/?p=4134 snow cross

    This picture floods me with emotion.  It is as if every tear I have ever shed over this disease has been stopped dead in its tracks by Christ. I cling to the verse: He will wipe away from them every tear from their eyes. Death will be no more; neither will there be mourning, nor crying, nor pain, any more. The first things have passed away. Revelation 21:4.  I, and many of you who are reading this, are ready for this to come - not death, but with death the ending of crying and pain. I don't remember when I saw this photo for the first time. But I have gone back and back to it. It is so startlingly powerful sometimes I can hardly take my eyes away. But here on earth? My tears continue to  flow and flow. For there is nothing more to do except the most important thing and that is to hold firmly and tightly to God's promise of eternal salvation. I feel I am being pushed to say: it is open to everyone. And the way to that heavenly home is to confess your sins to God, accept Christ as the Son of God and ask Him in to your life.  I know for some of you I sound like an old country preacher but these are the tenets that I hold true. Only those who believe will go to heaven. I know that sounds so not PC but scripture also says, "I am THE way The truth and THE life. No one comes to the Father except through me (Christ). John 14:6. I want you all to be there with me. He does too.]]>     4134 0 0 0 1800 0 0 1805 1798 1 1804 1796 1 1796 0 0 1798 http://www.riverbirchvineyards.com 0 0 1799 0 0 1801 0 0 1802 http://mstakesme.wordpress.com 0 0 1803 0 0 1806 1801 1 1807 1802 1 1808 1803 1 1809 0 0 1810 0 0 1811 0 0 1813 0 0 1814 0 0     Sunday's Phone Call Changed the Line-up http://www.sherrifillipo.com/2016/02/10/sundays-phone-call-changed-the-line-up/ Wed, 10 Feb 2016 14:09:14 +0000 http://www.sherrifillipo.com/?p=4140 vintage cars abandoned and rusting away in rural wyoming Momma Jane is fretting and she would say to you with good reason. She is ready for me to get to NC so quickly that she is coming here to take me away! Literally. She is driving up at the end of the week to pack me and my two fat cats up and we are headed south. Beloved will follow at a later time. I am not ready. But it is time based on Hospice's assessments of my list of physical ailments. So, our family (except the cats who aren't old enough to have a vote) are in agreement that I need to be headed home - last stop on this train. Mom will give me and Beloved a lovely space in which to live. We will have one side of their house, they the other. Mom and Dad said they would be there or not be there, whatever we need. I am blessed in this regard. They both are great cooks, make great drinks, can sing and dance and pretty much keep me occupied on the days Beloved is here in Corning. But with all that loveliness on my side, I am not ready to leave my sweet, sweet city of Corning  and I spent one whole day wailing that lament into thin air. It reminded me recently of one afternoon when my aunt, newly widowed, called. She is so saddened to think of needing to consider a smaller environment in which to live. She is also aware of the need to choose a place near one of her sons. Her call came a day or two after I had blogged about moth and rust. Scripture says that we should choose thing in this life that will earthly destruction can't take from us, like moth, or rust or thieves. It says to store in heaven those things that can't be touched. Loosen our grip on the earthly; hold firmly to that which is eternal. She said that made her feel better. I felt pretty good about myself (ha) until last week when that advice came tumbling back at me. Everyone said I should prepare to move by early next week. No! I haven't mentally prepared for this. I love my 3rd floor terrace, as do the cats. I'll never read out there ever again? No more day trips to the Finger Lakes? I could go on and on. And yet, I can't carry one of the lakes on my shoulder on in to heaven like carry on baggage. And except for the basics: pajamas, underwear, socks etc., there is nothing else I am packing for NC. They don't need my furniture on the other side. Now I must take my own medicine. I need to leave this town that I adore, be brave and head to my next stop, which is the last stop on this earthly journey. Continue to pray for me, as I do for you. The train keeps moving on.]]> 4140 0 0 0 1815 0 0 1816 0 0 1817 0 0 1818 0 0 1819 http://www.stageivnowwhat.blogspot.com 0 0 1820 0 0 1821 0 0 1822 0 0 1823 0 0 1824 0 0 1825 0 0 1826 0 0 For Everything There is a Season http://www.sherrifillipo.com/2016/02/12/for-everything-there-is-a-season/ Fri, 12 Feb 2016 19:34:19 +0000 http://www.sherrifillipo.com/?p=4156

    The end of this week was a whirlwind of tying things up. I had my final haircut with Dustin. I had been dreading it. How would he react? How would I react? I think he could see the deep fatigue in my face. We cried a little bit but not as much as I had thought. Getting my haircut allowed me (forced me) to walk 3/4 of the way down our main street which I would have avoided if I could have. I am glad I walked. 20 cold, chilly degrees but it gave me one more time to look in the windows. Did I ever tell you they use a local design team to come in and window dress each window for each season? It is thematic so there is a nice cohesion of design when you walk down the street. We have had very little snow this year but starting this past Tuesday, it has put on a show for me. I needed it. I can't describe it but it snows differently up here. With a little more power or punch. When you look out the windows, you are not seeing delicate fluffy flakes, it's like paratroopers coming in for a landing. Momma Jane should be here in a couple of hours. Her dance card is almost filled; as you can imagine, she has many fans in Corning and they are wanting to say good-bye to her as well. I don't want to leave. But I need her to help me with all kinds of small projects here that I am stuck on. That is what we will spend the weekend and early next week doing before we medicate (!) those cats one more time and head south. This time, for good. When my son was seeing a counselor many years ago, she had a saying to describe any of a variety of things: Maybe it was just meant for a season. I am forcing myself to overlay that sentiment over my years here. And then there is Ecclesiastes 3:1 which is familiar to most, "There is a time for everything, and a season for every activity under the heavens."  ]]>     4156 0 0 0 1835 0 0 1836 0 0 1837 0 0 1827 0 0 1828 0 0 1829 0 0 1830 0 0 1831 0 0 1832 0 0 1833 http://maesday.wordpress.com/ 0 0 1834 0 0 1840 0 0 1842 0 0     North Carolina http://www.sherrifillipo.com/2016/02/19/north-carolina/ Fri, 19 Feb 2016 15:06:42 +0000 http://www.sherrifillipo.com/?p=4164 image It has been an extremely emotional few days. On Friday , Mom arrived in Corning and from then on, weather kept rolling its dice over the weekend. Though we had no reason to be in NC at any given time, the longer we had to wait, the mentally worse I felt. On Sunday Mom suggested I pack since were weren't going to leave til Monday. Then it hit me, "What does one pack when one is stopping at her mother's on the way to heaven?" I stood walking around in circles at everything that after Monday, I would never see again - sea glass from all over the world, Corning glassware. Then I remembered the oft touted verse of not storing up things for this earth but heavenly things that will abide with me forever. Still looking around my apartment, the terrace, the river behind us...I was a total mess. Frankly? I wanted to drop on the spot so I wouldn't have to pack a suitcase of 'things for the sick' like pajamas, and more pajamas, two gallon-sized bags of meds. Oh, and my new cane! Nothing says sickness like a good four-point cane. I'll admit as much as I desire to see my son, I thought about gluing my feet to the floor and refusing to move.Sunday we were still there -22 degrees windchill and I still wanted to stay. I am not sure what aspired on Sunday. Momma kept one hand on her iPhone and one hand on the computer charting snow up and down the mountains of Virginia, the weather in Corning, Williamsport etc. I had no opinion. I can no longer drive and at any rate, I would be wrangling those two medicated cats in the back of the car. Monday arrives and Momma calculates that it still isn't safe to venture out so we sit another day with me fretting to the point of being out of control - visually trying to take everything as I wait another day. Tuesday arrives and by noon, Mom decrees we should try and head out. The roads, all 11 hours of them were dry. One cat dropped, comatose from the meds, the other howled until I let him completely out of the cage. He tromped through the luggage, settled down and slept several hours of the evening. We arrived at 1:00am with Dad pacing a groove into the hardware, fretting like Dads do. He got the luggage in and there on the kitchen table were two spring bouquets and two card, mine straight from heaven, "For everything there is a season..." Remember me writing that last week? I just stood there and stared. He said,"I had a hard time finding that one." At least two people thought I needed to remind myself of that one more time.  ]]> 4164 0 0 0 1844 0 0 1845 0 0 1846 0 0 1847 0 0 1848 http://maesday.wordpress.com/ 0 0 1849 0 0 1850 0 0 1851 https://www.mylifeline.org/StephanieSugars/updates 0 0 1852 0 0 1856 1850 0 1920 0 0 1919 0 0 1925 https://www.facebook.com/app_scoped_user_id/10153955094537412/ 0 0 1911 1845 0 Settling In http://www.sherrifillipo.com/2016/02/24/settling-in/ Wed, 24 Feb 2016 20:34:25 +0000 http://www.sherrifillipo.com/?p=4213 4213 0 0 0 1897 https://www.mylifeline.org/StephanieSugars/updates 0 0 1902 0 0 1901 0 0 1857 0 0 1858 0 0 1859 0 0 1860 http://maesday.wordpress.com/ 0 0 1861 1857 0 1862 1858 0 1863 1859 0 1864 1860 0 1865 http://HopeandCourage.com 0 0 1866 0 0 1867 0 0 1868 0 0 1869 http://joycelilleston.wordpress.com 0 0 1870 0 0 1906 0 0 1907 0 0 1872 0 0 1873 http://watersfamilyforum.blogspot.com 0 0 1915 http://ppowell453.wordpress.com 0 0 1881 0 0 1899 0 0 1900 0 0 1912 https://www.mylifeline.org/StephanieSugars/updates 0 0 1917 0 0 1918 https://plus.google.com/101108506250207408735 0 0 1921 0 0 My Final Blog http://www.sherrifillipo.com/2016/03/22/my-final-blog/ Tue, 22 Mar 2016 21:41:15 +0000 http://www.sherrifillipo.com/?p=4253 4253 0 0 0 1931 0 0 2006 0 0 2007 0 0 1933 1928 0 1932 http://Yahoo 1929 0 1929 0 0 2011 0 0 1928 0 0 1930 0 0 1934 0 0 1935 0 0 1936 0 0 1937 0 0 1938 https://plus.google.com/101108506250207408735 0 0 1939 http://www.fecthis.wordpress.com 0 0 1940 0 0 1941 0 0 1942 0 0 1943 http://Mrsbobleck@aol.com 0 0 1944 http://HopeandCourage.com 0 0 1945 http://mstakesme.wordpress.com 0 0 1946 http://gravatar.com/hinsopa 0 0 1947 0 0 1948 0 0 1949 0 0 1950 0 0 1951 0 0 1952 0 0 1953 0 0 1954 http://gravatar.com/bestbird 1928 0 1955 1953 0 1956 0 0 1957 0 0 1958 0 0 1959 0 0 1960 0 0 1961 0 0 1962 0 0 1963 0 0 1964 0 0 1965 0 0 1966 0 0 1967 0 0 1968 0 0 1969 0 0 1970 0 0 1971 0 0 1972 0 0 1973 0 0 1975 0 0 1976 http://www.darngoodlemonade.com 0 0 1977 http://maesday.wordpress.com/ 0 0 1978 https://www.facebook.com/app_scoped_user_id/10153836817209301/ 0 0 1979 0 0 1980 0 0 1981 0 0 1982 0 0 1983 0 0 1984 https://www.facebook.com/app_scoped_user_id/1054423401282845/ 0 0 1985 0 0 1986 http://Stage%20four%20metatastic%20breast%20cancer. 0 0 1987 0 0 1989 0 0 1990 0 0 1992 https://www.facebook.com/app_scoped_user_id/10153955094537412/ 0 0 2013 http://malleshwaram.manipalhospitals.com/speciality.php 0 0 1994 0 0 1995 0 0 1997 https://www.mylifeline.org/StephanieSugars/updates 0 0 2002 0 0 2004 http://gravatar.com/raslesa 0 0